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2015-2017 Huffington Post Contributions

WendyKramer,Co-FounderandDirectoroftheDonorSiblingRegistry

WendyKramerisCo-FounderandDirectoroftheDonorSiblingRegistry(DSR).The(DSR)wasfoundedin2000byWendyandhersonRyantoassistindividualsconceivedasaresultofsperm,eggorembryodonationthatareseekingtomakemutuallydesiredcontactwithotherswithwhomtheysharegeneticties.Withalmost60,000members,theDSRhashelpedtoconnect16,000ofthosewiththeirhalfsiblingsand/ortheirspermoreggdonors.(2018)

Asacharityorganizationwithoutoutsidesupport,Wendy,Ryan,andtheDSRhavepioneeredanationaldiscussionaboutthedonorconceptionindustryandfamilies,withresearch,speakingengagements,media

appearancesandinterviews.Besidesunitingrelatives,theDSRinforms,counselsandsupportsdonors,offspringandparents.TheDSRisalsoactivelyinvolvedinresearchregardinggametedonationoutcomes.Viaoutreachactivitiesandthroughthemedia,theDSReducatesmedicalprofessionalsandthepublicaboutissuesrelevanttoallfamiliesaffectedbydonorconception.

WendyhasbeenapeerreviewerforthejournalsHumanReproductionandRBMOnline.WendyandhersonRyanhaveappearedon60Minutes,TheOprahWinfreyShow,GoodMorningAmerica,TheTodayShow,NBC.com,ABCNews,CBSNews,CNN,NPR,andmanyothernewsshowsanddocumentaries.ShewasAssociateProducerofthe2011EmmyNominatedSpermDonor,aStyleNetworkTVshow,andMTV's20136-partdocu-seriesGenerationCryo.Wendyisco-authorofFindingourFamilies:AFirst-of-its-kindBookforDonorConceivedPeopleandTheirFamilies(Penguin).PublicationsincludetheNYTimes,theLATimes,theLondonTimes,theChicagoTribune,OMagazine,MOREMagazine,andhundredsofotherpublicationsaroundtheworld.

HuffingtonPostcloseddowntheircontributorplatformin2018.HereareWendy’sHuffingtonPostcontributionsfrom2015-2017thataddressmanyimportantissuesthataffectdonorfamiliesaroundtheworld.

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Contents DonorConception:Oldvs.NewThinking................................................................................................................................................3ChoosingaSpermBank...WhattoKnow..................................................................................................................................................5Sperm/EggDonation:Genetics&MentalIllness.....................................................................................................................................7HalfSiblingsfromSpermandEggDonation...........................................................................................................................................10Sperm&EggDonation:TellingistheFirstStep.....................................................................................................................................13OneWeekOfNewsAbouttheSpermDonationIndustry......................................................................................................................15FDACitizen’sPetition:TheNeedForSpermBankRegulation...............................................................................................................16SpermandEggDonation:10ThingsYourDoctor,Clinic,orSpermBankWon’tTellYou......................................................................17FINDINGOURPEOPLE:WendyandRyanKramer’sStory......................................................................................................................19TheAmbiguityof“Open”SpermDonation............................................................................................................................................20NoLawsProhibitDonorRecipientsfromReachingOuttoDonors........................................................................................................23“DonorBabies”areSometimesGrandparents!.....................................................................................................................................25AMulti-Billion$$UnregulatedIndustryWithNoOversight.WhatCouldPossiblyGoWrong?............................................................27ABriefHistoryofDonorConception......................................................................................................................................................29TheDonorSiblingRegistryReaches50,000Members!.........................................................................................................................33SpermDonationNeedsFederalRegulation...........................................................................................................................................34EggDonation:ReportingDiscrepancies&MedicalIssues.....................................................................................................................36THINKINGABOUTSELLINGYOURSPERMOREGGS?.............................................................................................................................38DonorConceivedPeopleSearching–OneCentralRegistry..................................................................................................................40AnOpenInvitationtoAllSpermBanks..................................................................................................................................................42DNA=DonorsNotAnonymous..............................................................................................................................................................44NBCStory:48DonorSiblingsandtheASRM..........................................................................................................................................46BiologyandBirthCertificates:OurRighttoAccuracy............................................................................................................................47DonorFamiliesConnecting:LoveorFear?.............................................................................................................................................5130k-60kUSSpermandEggDonorBirthsPerYear?...............................................................................................................................53GrandparentsviaDonorConception.....................................................................................................................................................55DonorConceivedPeopleandtheReproductiveMedicineIndustryDisconnect...................................................................................58TheVotingBoothofSpermandEggDonorAnonymity.........................................................................................................................61SpermDonorsWhoWishtoRemainAnonymousJustShouldn'tDonate.............................................................................................64RootsandWingsforDonorOffspring....................................................................................................................................................66TheEthicalSpermBank:AnAll-OpenSpermBank.AnIdeaWhoseTimeHasCome............................................................................67FINDINGOURPEOPLE:WendyandRyanKramer’sStorybyEllenGlazer..............................................................................................70

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Donor Conception: Old vs. New Thinking

11/08/2017

Oldthinking:Infertilityissomethingtobeashamedof.

Newthinking:Comingtotermswithinfertilityisaprocess.Withpropereducationandcounseling,healingcanbeginsothattheshameofinfertilityisn’tpassedalongtothechildastheshameofbeingdonorconceived.

Oldthinking:Keepthesecret.Don’ttellanyonethatyouusedadonor,especiallyyourchild.

Newthinking:Secrecyimpliesshame.Opennessandhonestyarethebestchoicesforallfamiliesandyourchildhastherighttoknowabouthowtheywereconceived.Donorchildrendonotlovetheirnon-biomomordadanyless,sothisissomethingthatshouldn’tbefeared.

Oldthinking:Waituntilthechildis“oldenough”tounderstanddonorconceptionbeforetellingthemtheyaredonorconceived.

Newthinking:Researchshowsthatstartingtheconversationlongbeforeachildcanfullyunderstandisbest.Thatway,theinformationisincorporatedintoachild’sidentity,andthereisneverany“telling”event.

Oldthinking:Waituntilachildis“oldenough”oruntiltheyaskbeforetellingthemabouthalfsiblings.

Newthinking:Wedon’twaittotellchildrenaboutanyotherrelatives,sowhywaittotellthemabouthalfsiblings?Whynotgiveachildtheopportunitytogrowupknowingtheirhalfbrothersandsisters?Whyriskachildaskinglateron,“YoumeanIcouldhavegrownupknowingmyhalfsiblings?Whydidn’tyouallowthat?”

Oldthinking:Ifyourdonorconceivedchildfindsoutthetruth,askthemtokeepthesecret.

Newthinking:Itisnothealthyorfairtoaskyourchildtokeepthisinformationasasecret.Secrecyimpliesshame.Beingdonorconceivedisapartoftheiridentityandneedstobeacknowledgedandembraced.Ifthechildisstrugglingwiththisnewinformation,it’saparent’sresponsibilitytowalkwiththemandsupportthem.Parents:youcanapologizeforkeepingthesecret.Thisisnolongeraboutyou.

Oldthinking:Donorscanandshouldremainanonymous,for18years(“open”donors)orforever(“anonymous”donors):

Newthinking:DNA=DonorsNotAnonymous.WithDNA(andtheInternet,socialmedia,publicrecords,etc.)donoranonymityceasestoexist.Manyeggclinics/agenciesarenowwritingtheDonorSiblingRegistryintotheircontractssothatcontactbetweenparentsanddonorsismaderightfrompregnancyorbirth.Whydon’tspermbanksdothesame?

Oldthinking:Donorconceivedpeopleshouldbekeptfromtheirbiologicalparentsforatleast18years,aswith“open”or“willing-to-be-known”donors:

Newthinking:Itcanbeextremelyimportantforbothmedicalandpsychosocialreasonsfordonoroffspringtoconnectwiththeirbiologicalparents,longbeforetheageof18.Parents:thechoicesthatyoumakeearlyonwillaffectyourchildfordecadestocome.

Oldthinking:Ifdonorsareanythingbut“anonymous”theywillhaverightsandresponsibilitiesfortheirdonoroffspring.

Newthinking:Donorswhodonatethroughclinicsandspermbankshavenolegalrightsorresponsibilities.

Oldthinking:Donorsshouldn’ttelltheirspousesorchildrenthattheyweredonors.

Newthinking:Donorsshouldbetellinganyonethattheyareinaseriousrelationshipwiththattheyhavesoldtheireggsorsperm.Donor’schildrenshouldbetoldthatthey(might)have(many)halfsiblings,astheytoomightwanttoconnect.Again,secrecyimpliesshame.Ownitandshareit.Yourfamilyhastherighttoknow.

Oldthinking:DNAdoesn’tmakeafamily.

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Newthinking:DNAiscertainlynottheonlywaytomakeafamily,butitcananddoesdefinefamily.Aswithadoption,manydonor-conceivedpeoplewishtoconnectwithandlearnabouttheirancestry,medicalhistory,andfirst-degreegeneticrelatives.Thereisnoneedforaparenttominimizetheimportanceoftheirchild’s“other”geneticrelatives.Forparents,itmightbenothingmorethana“donatedcell”,buttoadonorchilditcanmeansomuchmore.

“Youcan’treallyknowwhoyouareandwhereyou’regoingunlessyouknowwhereyoucomefrom.”-BruceSpringsteen

Oldthinking:Donorsshouldn’thaveanyobligationtoupdatetheirmedicalrecords.

Newthinking:Updatingandsharingofmedicalinformationiscrucialandcanevensavelives.Parents

shouldknowaboutallmedicalissuesreportedbyfamiliesanddonors,bothbeforeandafterpregnancy.

Oldthinking:Thereisnoneedforaccuraterecordkeepingonthechildrenbornfromgametedonations.

Newthinking:Thereisadireneedforaccuraterecordkeepingsothatgroupsofhalfsiblingsof50,100,or200stophappening.Youcan’tnotifyfamiliesofreportedmedicalissuesifyoudon’tknowwhotheyare.

Oldthinking:Itismoreimportanttoputprofitbeforeethicsinthereproductivemedicineindustry.

Newthinking:Theneedsandrightsofthechildshouldbeconsideredfirstandforemost.

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Choosing a Sperm Bank...What to Know

Anopenlettertoanyonechoosingaspermbank

08/24/2017

HelloFutureParents,

Iamsogladthatyou’rereadingthis,andthatyouaredoingyourduediligence.AndIknow,thiscanseemcompletelyoverwhelming-hanginthere!Honestly,rightnowthereisonlyonespermbankthatIcanrecommend,andthatisTheSpermBankofCalifornia(TSBC).Maybeit’sbecausetheyareanon-profit,theydoseemtotryabithardertokeepaccuraterecordsandtoactinamoreresponsibleandethicalmanner.Theyarenotperfect,butdoseemtotryhardertocontactdonorswhenachildturns18,notjustsendagenericletterinthemail,assomebanks,likeCaliforniaCryobankhavedone.Ornotresponding,orclaimingthatdonorsarenotreally“open”atall,assomebanksdo.TSBC’s“informedconsent”form(onourWhichSpermBankpage)thatyou’dneedtosign,impliesthatyouoryourchildshouldn’tcontactdonorsorhalfsiblingsoutsidethescopeoftheirmutualconsent/age18recommendations,butthisisunenforceableasanyonecancontactanyone,atanytime-and,yourchildisnotsigningoragreeingtoanything.

Wethinkthat18isanarbitrarynumber,onlyinplacetoprotectthespermbank’sliabilities.That’swhyanyfamilycanmakecontactatanytimeontheDonorSiblingRegistry(DSR).(Childrenunder18doneedtheirparent’spermission).Thereisnopsycho-socialresearchthatrecommendswaitinguntilage18,andalotofresearchandthatdoesshowthebenefitsofconnectingearlyoninachild’slife.Ifachildcould

havetheopportunitytogrowupknowingtheirfirst-degreegeneticrelatives,thenwhydeliberatelykeepthemfromhim/her?

ManyeggclinicsandagenciesarenowwritingtheDSRintotheirparent-donorcontracts,soanonymous(ifwished)contactismadeontheDSRrightfrompregnancy/birth.Messages,photosandmedicalinformationcanthenbesharedfreely.Parentsanddonorsareempoweredtodecideexactlywhattypeofcommunicationtheyareinterestedin,withouttheneedofamiddlemanwhoknowsnothingaboutthemortheirfamily,ortheneedsoftheirchild.Notonespermbankwilldothis.Askyourpotentialspermbank“whynot?”

Somespermbanks“claim”tolimitnumbersofchildren,butthetruthis...youcan’tlimituntilyouactuallyhaveaccuraterecords,whichnonedo,asreportingbirthsisvoluntary.Somespermbankshaveestimatedthatonly20-40%ofwomenactuallyreportbacktheirbirthsbacktothespermbanks.TheDSRhasmanyhalfsiblinggroupsofmorethan100.XytexandFairfaxarethetwospermbankswiththemostnumberofverylargehalfsiblinggroups.

Becauseoflittleregulationoroversight,besidestheFDAmandatedSTDtesting,andtestingforasmallhandfulofotherdiseases,eachbankcansaywhatevertheywant,andthendowhatevertheywant.So,somebanks,testsomedonors,forsomediseases.YoucanreadallaboutthemedicalandgeneticissueshereontheDSR’sMedicalIssuespage.

SharingmedicalinformationwithhalfsiblingfamiliesanddonorsontheDSRisoftentimestheonlywaytoknowaboutthistypeofimportantmedicalinformation.Familiesshouldneverrelyonspermbankstocontactfamilieswhenmedicalissuesarise,asmostoftentheyareunaware,andevenwhentheyaremadeaware,weknowthattheyfrequentlydonotupdatethefamilies.

IwoulddefinitelysteerclearofthebigbankssuchasCaliforniaCryobank,Xytex,Fairfax/CLI/PacificReproductiveServices(PRS),NWCryobank,theUS“Scandinavian”spermbankslikeSeattle/EuropeanSpermBank/Cryos,orNewEnglandCryogenic(NECC).IusedCaliforniaCryobank,andcouldneverrecommendthem,asonmanyoccasionsIhaven’t

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foundthemtobehonest.SeetheJohnsonvs.CaliforniaCryobankcase(thespermbankdeletedPolycysticKidneyDiseasefromadonor’sprofile),thisOmagazineArticle,andmyBlogentryontheDSR.Atleasttwospermbanks,FairfaxandNECChavenotlettheirdonorsknowtheirowndonornumbers,tryingtoactuallyprohibitthesharingandupdatingofinformationbydonorswithfamiliesontheDSR.

ReadtheseNYTimesarticles:OneSpermDonor,150OffspringandInChoosingaSpermDonor,ARolloftheGeneticDice.Also,seethis(oneofmany)disturbingarticleaboutXytex.Readthis2016NYTimesarticle:SpermBanksAccusedofLosingSamplesandLyingAboutDonors.Andthere’salsothisoneregardinganNECClawsuitinvolvingachildbornwithCysticFibrosis.

ReadthroughtheusercommentsabouttheseandotherbanksonourWhichSpermBankpage.Askyourpotentialspermbankthe30questionswe’veprovidedonthatpage.Forthemostpart,thesespermbanksseemonlyresponsivetopeoplebeforetheyselltheirproduct.

Ihopethatyou’llbeusinganopendonor-pleasereadthroughthe25publishedpapersonourResearchpageandtheadvicethatdonorconceivedpeopleofferontheDSR’sOffspringpagetobetterunderstandwhyusinganopendonorisSOimportant.TheDSRhasspentmanyyearsresearching,listening,andrespondingtotheneedsandissuesofdonor-conceivedpeople,andweknowthattheydonotrecommendthatprospectiveparentsuseanonymousdonors.Rememberthough,thatwithoutofferingearlyconnections(liketheeggclinics/agenciesaredoing)allspermdonorsareessentiallyanonymous,albeitsomeonlyforthefirst18yearsofadonorconceivedperson’slife.

Also,Iwouldsuggestthataftermakingashortlistofpossibledonors,thatyouchecktheDSRtoseeifanyofthefamilieswhousedthosedonorsarealreadylistedonoursite.Ifso,youcouldreachouttothemtoseeifthereareanymedicalissuesthatyoushouldknowabout.Also,youcanseehowmanyfamiliesarealreadypostedforthatdonor.SharingandupdatingmedicalinformationontheDSRwithotherfamilies(andthedonor)canbeimportantandevenlife-saving.Wouldn’tyouwanttoknowifthedonoryou’rethinkingofusingalreadyhas30,50or200kidsoutthereandthattoomanyofthemhadautism,ADHD,oraheartdisease?

PleasereadALLthearticlesinmyHuffingtonPostBlog,astheycontainalotofinformationyouwon’tfindanywhereelse,forexample:“10ThingsyourDoctororSpermBankWon’tTellYou”.IhighlyrecommendreadingFindingOurFamilies:AFirst-Of-ItsKindBookforDonorConceivedPeopleandTheirFamilies,asit’severythingIwishIwouldhaveknownwhenIwasbeginningmyjourneyasaparentofadonorconceivedchild.

Wejustsubmitted(July2017)anFDACitizen’sPetitionwith173powerfulcomments,storiesandtestimonialsfromparents,donorsanddonorconceivedpeoplethatshouldbereadbyanyonewishingtolearnmoreaboutthereproductivemedicineindustry.

Bestwishesandgoodluck!

~Wendy

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Sperm/Egg Donation: Genetics & Mental Illness

03/29/2017

ThesetworecentcommentssubmittedtothetheDonorSiblingRegistry’sFDACitizen’sPetitionhighlighttheneedformorecomprehensivemedicaltestingofdonors,includingpsychologicalevaluations,theintakeofcompletefamilymedicalhistories,andcontinuedupdatingandsharingofmedicalinformationreportedbydonorsandfamilies.

MyFairfaxIDdonorcommittedsuicidein2013.Ilearnedofhisdeathoneweekafterthebirthofmysecondchildin2016.ThatmeansIposthumouslyconceivedoneorbothofmychildrenwithaFairfaxCryobankdonor.Ididnotconsenttothis,andIdonotknowifthedonorwouldhaveconsentedtothis.Whenweweremakingthecriticaldecisiononwhowouldbebiologicalfatherofourchildren,wespecificallyrequiredtwothings:1)thedonorhadtobean“IDoption”donorsothatourchildrenwouldhavetheaccesstolearnasmuch,oraslittle,abouttheirbiologicalfatherastheydesire;and2)thedonorhavenohistoryofmentalillness.InthetwosentenceinformalletterIreceivedin2016,Fairfaxadvisedmethatthedonorcommittedsuicidein2013.Fairfaxsaidtheylastgotamedicalupdateonthedonorin2013andnomentalillnesswasreportedor“notedbyanystaffmember”.AsaresultofFairfax’slackofaction,mychildrenhavenotonlylosttheirrighttoseekouttheirdonoratage18,buttheyalsomayormaynothaveinheritedapredispositiontosuicide.Fairfaxstillhasthisdonor

listedontheirwebsiteas“inactive”-withnoindicationwhatsoeverthatheisdead.Thisisunconscionable.TheFDAneedstostepinandregulatethisindustryonafederallevel.

Iamadonoroffspring(1953).Mybiofatherturnedouttobemymother’sveryownphysician.Shewasassuredthatitwouldbearesidentfromthehospital,butheconfessedtoherlater,whensheaskedhimaboutthecolorofmyeyes.Theylookedlikehis.Hediedattheageof41,veryyoung.IwastoldabouthimwhenIwasinmyearlyteens,andshegavemeacopyofhisobituaryandaphotograph.Mysonwas16whenheendedhislife.Ihavebattleddepressionforyears.Idecidedtoresearchmypaternalsideandwasshockedbymyfindings.BothofmypaternalgrandparentsdiedinapsychiatrichospitalinIowa.Isentforcopiesofthemedicalrecordsandfoundthatmygrandfathersufferedwithpsychosisandmygrandmotherlivedoutherlifeinacatatonicstate.Mybiofatherhadason,whoendedhislifebyanoverdose,whenhewasinhisearly30’s.Mybiofatherhadonebrotherandthreeofhischildrenendedtheirlives.Onedrovehercaroveracliffandtheothertwooverdosedonprescriptionmedication.Ifoundahistoryofdepression,schizophreniaandbipolardisorderinthefamily.Iwentbackfurtherinthefamilytree,andthereIfoundselfinflictedgunshotwounds,overdoses,andoneeventookpoison.Mypaternalgrandfatherwasreallyunbalanced.Hewasabigamistandmarriedtofourdifferentwomen(nodivorce)thathesimplywalkedawayfrom.Hewalkedawayfromhisfirsttwochildrenaswell.Thatisnotnormal.Ihavemanyserioushealthproblemsasaresultofthatdonor.Unfortunately,sodomychildren,andnowmyFouryearoldgrandsonisshowingsignsofadisorder.

FiveMajorMentalIllnessesTracedtoSameGeneticVariations

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Allmedicalupdatesshouldbeavailabletoallfamilieswhohavepurchasedthegametesofanyonedonor,andalldonorsshouldbeawareofchildrenbornwithanyhealthissues.

Bothnatureandnurturecontributetomanypsychologicalandmentaldisorders.Butmostdonorconceivedpeopleknowlittletonothingaboutthefamilyhistory,ortheongoingpsychologicalhealthoftheirunknowngeneticrelatives.Theselfreportedmedicalinformationthatdonorssubmitareonlyreflectiveofonedayinthelifeofahealthydonor,whatthatdonorwantstheclinictoknow,andcertainlynotwhathappensafterwards.Regularmedicalupdatesarenecessaryasmanymentalillnessesareadultonset,andsharingupdatedinformationamongrelatedfamiliesisimperative.Additionally,donorswithmentalillness/issuesorgroupsofhalfsiblingswithmentalillness/issuesshoulddeterspermbanksfromcontinuingtosellthatdonor’sgametes.

TheDonorSiblingRegistryhashighnumbersoflargehalfsiblinggroupsreportingchildrenwiththeseissues:

IhavehadatheoryforawhilethatthereisahigherincidenceofAsperger’samongdonors.IhaveheardfromquiteafewdonorswithAsperger’sandalsofromfamilieswhodiscoverthattheirdonorhasAsperger’soncetheyconnectontheDonorSiblingRegistry.ThesefamiliesoftentimeshavehalfsiblinggroupsthathavechildrenwithADHD,Asperger’s,Tourette’s,andwithkidssomewhereontheautismspectrum.36%ofour1700surveyedspermdonorrecipientsreport

childrenwiththeseissues,whilesomeAutismstudiesreportthat1in68peoplehaveautism.Veryinteresting!

MytheoryaboutdonorsisthatAsperger’smaysometimescontributetothat“disconnect”neededtodonatesperm:tonotbeconcernedabouthaving(many!)biologicalchildrenoutintheworldthatthey’llneverknow.Iknowalotofmenwhosaytheycouldneverdonateforthisreason,soIdothinkthereissomelevelofemotionaldisconnectneeded.Again,thisismyopinion/theory,andnotbackedupbyanyactualresearch.

Fromonedonor:

“I’madonorwhoprobablyhasAsperger’s,andI’mawarethatoneofmydonorchildrenexhibitsmanytraitsofAsperger’s,buthismotherhasn’tformallydiagnosedhim.MysonfrommymarriagealsoexhibitsAsperger’sandTourette’ssymptoms.?”?

Fromafewparents:

“Ihave3children,allfromthesamedonor.OneisPDD(HighFunctioning),theother2areADHD.InoursiblingsgroupthereareisapairofautistictwinsandoneotherPDDchild,andIthinkalsoatleast2ADHDs.”

”…wealsohaveahighrateofautismdiagnosedamongtheboysinthesiblinggroup(wehave60families)”.??Wehavemultipleoffspringwithtics(includingseveralwithTourette’s)andADD/ADHD.?”??

“Mydaughterhaspdd-nos,nonverballearningdisability,mooddisorder-nosandadhd.HerdoctorhasraisedthequestionifAsperger’s.Mydonor’sdaughterwithhiswifehasAspergers&adhd.Thedonorhadadhd&undiagnosedAspergers.?”?

“Ihadgenetictestingonmy2boysthatwereconceivedfromthesamedonor.Theyinheritedamutation.OnagenethatisknowntocauseautismandRhettsyndrome.Bothofmyboysareautistic.Oneoftheirdonorhalfsiblingswhoisalsoautisticjustreceivedgeneticresultsandshealsoinheritedthesamemutationinthesameexactspotinthehergenomeasbothmyboys.”

“InoticedonaFacebooksitethat3half-sibsallhadautism...Icheckedandthatdonor’sprofiledidnotincludethisupdate!Themothersreporteditbuttheclinicdecidednotto‘update’thedonor’sprofile

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causetheysaidtherewasnoproofthatautismisgenetic!”

“WeusedCaliforniaCryobank,andIactuallycalledthemafterourdaughterwasdiagnosedwithautismandanxietydisorder,justtoaskwhytheydidnot,andmaybetheyshould,askthesetypesofquestionsonthedonorshealthinfo.Thegeneticisttoldmethattheywouldn’ttakeaspecimenfromanautisticperson,thatthestaff“wouldhaveknownbymeetinghim”ifhehadASD.Ha!PeoplewithASDgotheirwholeliveswithoutbeingdiagnosed...youcannottellbyLOOKINGatsomeone!Iwassurprisedanddisappointedattheirlackofknowledgeonit.”

WhatYouNeedToKnowAboutTheGeneticsofMentalDisorders

Ifyouhaveastorytotell,anexpertopinion,orjustwanttheFDAtohearyourvoice,pleaseaddacommenttoourFDACitizen’sPetition:BecausetheFDAcurrentlymandatesonlyminimalmedicaltestingofspermandeggdonors(nootherregulationexists),werequestthatthecommissioneroftheFDAlookintothestateofaffairssurroundingthespermdonationindustry,andthendeveloptheappropriateandmuchneededregulation/oversight.

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Half Siblings from Sperm and Egg Donation

03/13/2017

Threehalfsistersmeet

Familycanbeformedanddefinedinsomanydifferentways,butbiologyhasalwaysbeenthemostcommonfamilybond.Ifbiologydidn’tmatter,we’dgivebirthtoourbabies,andthenjustpickanybabyfromthehospitalnurserytotakehome.Thatdoesn’thappen!Inmostcases,parentswanttotakehomeandraisethechildthattheyhaveageneticconnectionwith.

Havingabiologicalconnectiontoachild(tooneparent)matterstoparentswhousespermandeggdonors*.So,ifparentsvaluethisgeneticconnectionononesideofourchild’sfamilytree,shouldn’ttheyalsorecognizeandvalueitsimportanceontheotherside?AlltoooftenIhearparentsnegateorminimizetheimportanceoftheirchildconnectingwiththeirunknownbiologicalparent(thedonor)andtheirhalfsiblings(peopleconceivedfromthesamedonor).Somerefertothedonor’scontributionasmerely“a

pieceofgeneticmaterial”orjusta“donatedcell”.Buttomanydonorconceivedpeople,it’ssomuchmore.

Donoroffspringdesiretoknowabouttheirgeneticrelatives.

GeneticuncertaintyhascloudedmylifesinceIwas12yearsold,whenIlearnedthatmyconceptionwasfacilitatedbyananonymousspermdonor.Thoughtheshockdissolvedinthefollowingmonths,I’mremindedofthisobscurityentwinedinmyDNAwhenI’maskedtofilloutamedicalhistoryformatthedoctor’sofficeandhavetoindicatethat,geneticallyspeaking,halfofmyfamilytreeremainsinshadow.I’mjoiningtheDonorSiblingRegistryinthehopeofconnectingwithotherswhohavehadsimilarexperiences,hearingstories,andmaybeevenfindingabiologicalhalf-siblingorrelative.

Evenchildrenofdonorscanbecuriousabouttheirhalfsiblings.

Weoftentalkabouttheimportanceofhonestyindonorfamilies,andhonoringachild’scuriosityabouttheirfirst-degreegeneticrelatives.Dodonorsalsoowetheirownchildrenthetruthabouttheirdonating?Dothedonor’schildrenhavearighttoknowthatthey(may)havehalfsiblings?DNAtestingisalreadyrevealingthesesfamilyconnections,anditwillonlycontinuetobecomemorecommon.Myguessisthatmostdonorsdonotinformtheirfamilies,assomeareashamed,somedon’tconsiderdonorchildrenastrue“family”,someareafraidof100kidscomingforward,andsomehavespousesverymuchagainstit.IshouldnotethatwedohaveafewthousanddonorsontheDSRwhoareopentocontact(withsomewonderfulresultingstories),andwedohearaboutpositivedonor-offspringconnectionsalsomadethroughDNA.

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IrecentlyfoundoutthatmyfatherdonatedtospermbanksmanytimesyearsagoandIwonderedifIhaveanymoresiblingsoutthere.

Whynotgivechildrentheopportunitytogrowupknowingtheirhalfsiblings?

Ourkidsaretwoandhalfyearsold.Theyareonly3weeksapartinage.Theyaresoalikeandtheyaresodifferent.Theyspent4daystogether,fightingandplayingandthenfightingsomemore.Withinourindividualfamiliestheywereonlychildren.Inournewfamilytheyareverymuchsisterandbrother.Therearen’twordstoexplainthesenseofpeacethathasgivenusasparents.There’snoyardstickthatcanmeasurehowmuchthishasenrichedourlives.

Someparentswhohaveseentheirchildren’shalfsiblingspostedontheDonorSiblingRegistry(DSR)havesaidthattheywillwaittoestablishcontactwiththehalfsiblingsuntiltheirchildisoldenoughtomakethatspecificrequest.Generally,childrendon’tdecidewhentomeettheirrelatives.(Theyalsodon’tdecidethetimingofalotofthings!)Wedon’twaituntiltheyshowinterestorasktomeetAuntShirley,CousinFrank,orGrandpaLarrytomaketheintroduction.Ourchildrengrowupknowingtheirrelatives,andthen,whentheyareolder,theychoosewhotheywishtobeincontactwith.

Justimaginebeing20somethingandfindingsiblingsonyourownwhenDNAtestingisevenmorewildlypopular,ortheyfindyou.Youthendevelopsomekindofrelationship.Youfindthatmanyofthesesiblingshadparentswhoencouragedtheserelationships,evenfrombabyhood.Youseethepictures,youhearthestories.Disney,camping,birthdays...Acoupleofthemwillberoomiesincollege,maidofhonorinasiblingwedding,etc.Tome,thiswouldbecrushing.Iwouldfeelsocheated.WhetherornotIhadgreatneighborpals,awesomecousins,orevensiblingsfromthesamehome.

Wechoseearlycontactwithhalfsiblingsbecausewefeltifhewantedtoendcontactwhenhewasoldenoughtochoose,hecould.Butifwewaiteduntilhewasolder,andtoldhimweknewhishalfsiblingsallalong,andhewishedforthatcontact,therewouldbealotofyearsandmissedopportunitiesgone.Wefeelbeingopen,honest,andhavingconnectedearlyonmayinstillasenseofprideandwardoffanyshamethatmaycomeaboutifweweresecretiveaboutthispartofhisstoryandfamily.Wealsohave

asonwhowasadoptedatbirthsowearebigoncelebratingandembracingthewaysinwhichourfamilycametobe.

ConnectingontheDSRmaybetheonlywaytoshare/updateimportantmedicalinformationwithotherfamilies.

Formost,connectingwithhalfsiblingsontheDSRhasbeenanoverwhelminglypositiveexperience:

Ijustfoundmyhalf-siblingthisyear.Iam29yearsoldandwishthatIcouldhaveknownhimmywholelife.Itisreallyspecial,andI’msothankfultohavefoundhim.Wemetacoupleofmonthsagoandit’slikewehaveknowneachotherallalong.

Ithinkit’sreallycoolthatIhavesiblings(I’mclosetothreesistersandonebrother).WegetclosereveryyearbecauseweFaceTime,text,andgettogetherinthesummertime;eversinceIwasthree.MysistersandIarenowteamingupagainstourbrother.Andit’sfunpickingonhim.Welivethousandsofmilesapart,yetitfeelslikewealllivetogether.We’retalkingaboutgoingtocollegeinthesametown.

Twins(oneitherend)meethalfsiblingsforthefirsttime

You’renevertoooldtofindhalfsiblings.

WhenIsignedupwiththeDSRayearago,Ididitmorewiththehopesoffindinginformationaboutmydonor,thanwithanythoughtsofactuallyfindingasibling.Afterall,I’dbeconceivedinthelatesixties,

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wellbeforetheexistenceofspermbankswithregistereddonors.Atthattimeeverythingwasverysecretive,withabsolutelynoinformationgiventotheparents.WhenIgottotheDSR,Iwasthefirstpersontocreatealistingundermymom’sdoctor’sname,fromNewYorkCity.Abouteightmonthslater,awomanemailedmetosaythathermotherhadusedthesamedoctorasmine,justtwoyearslater.Wefiguredwecouldbandtogethertofindoutasmuchinfoaswecouldabouthowthedoctor(nowlongdeceased)hadgoneaboutfindingdonors.Afterafewmonthsofresearch,wewereabletopiecetogetherthatthepoolofdonorsheusedwasactuallyverysmall.Ithonestlyhadn’toccurredtousbeforethatwecouldbesiblings,butoncewelearnedaboutthesmalldonorpool,wefiguredwhynotgiveitashot.Sowefoundthemostreliableandthoroughtestingfacility,anddidahalf-siblingDNAtest.Loandbehold,itcamebackwith99.7%certaintythatweweresisters!Soforalltheolderdonoroffspringouttherewhohaveonlyfragmentsofthestoryoftheirconception,don’tgiveuphope.

Andfinally,ofcoursetherearenoguaranteesthatallfamilyconnectionswillbeentirelypositive.

SomepeoplearesuspiciouswhentheylookatthesuccessstoriesontheDSR,andhaveasked,“howcan

theseconnectionsallbesopositive?”WhilethegreatmajorityofnewfamilyconnectionsontheDSRareindeedverypositive,somemightbemoreflatorsometimesevenmoreofastruggle.Ourfamiliesaremadeupfromallraces,religions/non-believers,academicbackgrounds,genderidentities,sexualorientations,abilities,socio-economicbackgrounds,politicalperspectives,nationalitiesandvariedpersonalitytypes.

Allfamilieshaveissues.Notallpeoplearelike-minded,orhaveenoughincommontowishforcontinuedrelationship,andsometimespeopledon’tagreeonthedesiredlevelordegreeofcontact.WhenwelookaroundourThanksgivingtable,dowewanttohangoutwitheveryonethere?Sometimesnot!Somefamilymembersarejustnotthekindofpeopleyou’dwanttohangoutwith,andsomemayjustbepeoplewithwhomwedon’thaveenoughincommon.Arethesereasonstonotseekoutyour(oryourchild’s)unknowngeneticrelatives?Wethinknot!

*Peoplewhoselltheirspermandeggsarecommonlyknownas“donors”,althoughmostdon’tactuallydonateanything.

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Sperm & Egg Donation: Telling is the First Step

03/10/2017

In2000whenmysonandIstartedtheDonorSiblingRegistry(DSR)(initiallyasaYahoochatdiscussiongroup),thepredominantconversationwasaboutdisclosure.Backthenmany,mostlystraight,parentswereinvestedinkeepingthesecret,andcamefromthepointofviewthatasaparent,disclosurewastheirpersonalchoicetomakefortheirfamily.Theydidnotliketohearaboutwhynottelling(lying)mightbeharmfultooffspringandunhealthyfortheirfamily.Theydidn’twanttohearthatsecrecyimpliedshame.

“Secretsarelikelandminesyouknow.Theycangooffatanytime,butuntiltheygooffyou’resortoftreadingaroundthem.”-DonorConceivedPerson,BarryStevens

Somefeltattackedandoffendedwhenoffspringorotherparentsgavereasonsastowhylyingtotheirchildwasnotright.Theystucktotheirguns,evenwhentheyheardfromoffspringwhoreportedfeelingliketheirworldhadbeenturnedupsidedown,whentheydiscoveredthetruthlateroninlife.Theseparentsinsistedthattheywerenottellingtheirchildrenbecauseitwould“hurtthechild”toknowthetruth.Theydidn’twanttohearthatnon-disclosurewasmoreabouttheirown(ortheirpartner’s)shameandfearandnotatallaboutwhatwasinthebestinterestsofthechild.

Whyshouldaparent’srighttosecrecytrumpachild’srighttothetruth?Healthyrelationshipsarebuiltonfoundationsoftrustandhonesty.Weexpecthonestyfromourchildren,shouldn’ttheyexpectthesamefromus?

Thisconversationisnotanewone.Honestyhaslongbeenanacceptedpracticewithinadoptivefamilies,whileatthesametime,spermbanksandeggclinicswere(hopefullynolonger)advisingparentsto“keepthesecret”.Therewasneveranypsychologicalresearchtobackthisup,soweknowthattheadvicehadnopsychologicalfoundationandnomerit.Itonlyservedtokeeptheindustry’sdirtysecretssecret.Italsoservedtoprotecttheinfertilenon-biomomordad,anditperpetuatedtheshameofinfertility.Itcreatedsomanyparentswithshouldersheavyfromcarryingadeepdarksecretfordecades.Thisiswhywestronglyrecommendinfertilitycounseling(beforepregnancy)fornon-biomomsanddads.It’simportantthattheyworkthroughtheirowngriefaboutbeinginfertilesoasnottopassalongthatgrief,intheformofshame,totheirchildren.

Manyoftheparentswhochoseto“keepthesecret”leftourgroup.SomehavejoinedtheDSRinsecret,connectingwithotherfamiliesonlytotellthemthattheyhavenointentionoftellingtheirchildren.Ican’thelpbutwonderhowthesefamilieshavefared,if/whenthesecretcameout,howthechildrenreacted,andhowlongtheyallhavebeforeDNArevealsthetruthtoeveryone.

Tellingisjustthebeginningthough.Justbecauseachildknowsthattheywereconceivedwiththehelpofadonor,doesn’tmeantheywillhavepeacewithnot

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knowingaboutonehalfoftheiridentity,medicalbackgroundandcloserelatives.Theconversationsontheheelsofdisclosureareextremelyimportant.Theyshouldacknowledge,honor,andvalidateanycuriositythatdonoroffspringhaveabouttheirunknownfirstdegreegeneticrelatives.Theyshouldsupportanydesirethatadonoroffspringhastosearchfor,andtoconnectwiththeserelatives.Theconversationsshouldbeongoingandaffirming.Tellingisonlythefirststeptocreatinghealthyandhappydonorfamilies.

Ifyouneedhelpinsupportingyourdonorconceivedchild,includingdecidingwhenandhowtotellyourchild,readthroughourDSRCounselingPage.Formoreindepthadvice(fromallofthestakeholders:offspring,parentsanddonors),readFindingOurFamilies:AFirst-of-Its-KindBookForDonorConceivedPeopleandTheirFamilies.

SomeotherissuesaddressedonourCounselingPage:

Howtomoveforwardinconnectingwithadonororahalf-siblingfamily(ormanyfamilies).

Non-biologicalparentsfeelinguncomfortableabouttheirchildrenreachingouttobiologicalrelatives.

Howtocopewhenyouhaveaburningdesiretoknowyourgenetic/ancestralhistory,bothwithandwithoutparentalsupport.

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One Week Of News About the Sperm Donation Industry

02/10/2017

WISCTV:Womanhopesformoreregulation,protectionfordonor-conceivedpeople

“I’mnotlookingforanewDad.IhaveaDad,”shesaid.“He’sthebestDadIcouldeveraskfor.I’mjustlookingforapartofmyselfandI’msuretherearelotsofpeopleouttheredoingthesame.”“Ifeellikeeverybodyhasarighttoknowwheretheycomefrom,”shesaid.“Ifhewassick,ifhewascarryingageneticdisease,IfeellikeIshouldknowaboutthat.Otherwise,it’slikeacrapshoot.WhatcouldIhavethatI’dpassontomykids?Ihavenoidea.”

NBCDenver:Motherworriesaboutspermdonor’smedicalhistoryAstoryaboutamotherwhousedspermfromCaliforniaCryobank.

Therealityofconceivingwithananonymousdonorhitherwhenshelearnedtheboyswerespeechdelayed.Whentheyturnedsix,Jaydenwasdiagnosedwithcancer.“Allofthesedoctors,includingthepediatrician,wouldaskmeabouttheirgenes,abouttheirfamilyhistory,”shesaid.TheinformationLynnettedidhavewaslimited.Amedicalhistoryquestionnairewithwasvirtuallyblank.Thedonorclaimedneitherhe,noranyofhisclosefamily,sufferedanythingonthislonglistofillnesses.Eventothequestion“anyotherconditionnotlistedabove”hesaid“no.”

NBCAtlanta:SpermForSale,FightingForChangeAstoryaboutamotherwhousedXytexCryobank.

Max’sbiologicalfatherwasconvictedofburglaryanddiagnosedwithbipolarschizophrenia,whichhasabouta10%chanceofbeinginheritedbyhisoffspring.Andit’sbelievedhehasmanyoffspring.Accordingtocourtrecordsandemails,thedonorhasatleast36children,scatteredin5statesand3countries.

That’swhyinJanuary,Kramerfiledacitizen’spetitionwiththeFDAbeggingforchange.TheFDAistakingcommentsfromthepublicasitdecideswhetherthisisaseriousenoughissuewithcommunityorindustrysupporttoinvestigate.Severalparentswhohavealreadycommentedsaytheytoofound“inconsistentinformation”intheirdonorprofiles.OnemedicalprofessionaltoldtheFDA“puppybreedingismoreregulated.”Outofinterest,11Alivecheckedtherequirementsforpuppybreeders.Bothmustbelicensediftheywanttohaveacertainsalesvolume.Bothareinspectedwithafocusonsafetyandcleanliness.Thedifferenceseemstocomeinthefactdogownerswanttobragandareopenabouttheirpuppy’slineagesoclaimsofparentageareoftenbettertracked.Ifyouaretoldcontractuallyyouarebuyingapurebredandlaterfindoutthat’snotthecase,youhavestrongcaseincourt.

WRDW12News:BothliquidnitrogentankswereneverpermittedforuseatXytex,firemarshalsays

ApoliceofficerinGeorgiadiedafterinhalingafatalamountofliquidnitrogenwhiletryingtorescueaworkeratXytexCryobank.

InvestigatorssayonedeputyhasdiedafterinhalinganunknownchemicalsubstanceatXytexCorporationinAugusta.TheStateFireCommissionerhasissuedceaseanddesistorderstocompanyinvolvedindeadlyliquidnitrogenleak.TheorderswereissuedtoXytexCorpTuesdaymorning.TheorderstatestheAirgasLiquidNitrogentankwasutilizedwithoutaninstallationpermitinspection,accordingtoGlennAllenwiththeOfficeofInsuranceandSafetyFireCommissioner.ItturnsoutXytexdidnothaveapermitinspectiontostartusingtheAirgastank.Now,theStateDepartmentofInsuranceiscitingthemandtheNitrogentankmaker,Airgas.Theyarenotallowedtousethetanksuntiltheycorrectthesystemandthecommissionerre-inspectsit.XytexandAirgasgottwocitations.

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FDA Citizen’s Petition: The Need For Sperm Bank Regulation

Wejustfileda“Citizen’sPetition”totheFDA,andit’snowavailableforpeopletoaddcomments.Please,addyourcomments,asthemoreweget,thebetterourchancesofaccomplishingsomething(anything….evenafurtherconversationwiththeFDAwouldbeconsideredsuccess).https://www.regulations.gov/docket?D=FDA-2017-P-0052

“BecausetheFDAcurrentlymandatesminimalmedicaltestingofspermandeggdonors(nootherregulationexists),werequestthatthecommissioneroftheFDAlookintothestateofaffairssurroundingthespermdonationindustry,andthendeveloptheappropriateandmuchneededregulation/oversight.”

FrommyFDAcontact:

“GoodMorningWendy,I’veattachedyouracknowledgementreceiptforthepetition.ItsdocketnumberisofficiallyFDA-2017-P-0052.Youmayvieworcommentonthepetitionthroughwww.regulations.govhereisthelinktoyourpetition:https://www.regulations.gov/searchResults…IhavesentthepetitiontotheFDA’sCenterforBiologicsEvaluationandResearch(CBER).Perregulationthecenterhas180daystorespondtoyouaboutthispetition.Thatresponsemaybeadecisionoraninterimresponse.Wewon’tlikelyreceiveanupdatebeforethattimeunlessthecenterhasquestionsforyou.Inthatcase,theywillcontactyoudirectly.”

Afewinitialpubliccomments:

“Ourcryobankhasbeenunableorunwillingtolocateour“identityrelease”donorfor6monthsnow,despiteallrequirements/paperworkbeinginorder,anddoesnotreturnphonecallsoremailsregardingthestatusofourrequesttocontactthedonor.However,withDNAtestingwewereabletolocatethedonorourselves,onlytolearnthatsomeoftheoriginalinformationwewereprovidedbythecryobankwasincorrect,includingidentityreleasestatus,ethnicity/religion,collegeinformation,SATscores,andcertainhealthinformation.Thisindustryneedstoberegulatedsothatdonorinformationisfactuallycorrectandthatthecryobanksarebeingforthrightandhonestintheirdealingswithclients.”

“TheUnitedStatesisoneoftheonlydevelopedcountriesonearththatislackingcrucialregulationandoversightoftheartificialreproductionindustry.Thereisampleresearchsupportingthenegativeeffectsthatthislackofregulationcontinuestocause.TheFDAhasaresponsibilitytoputcommonsenseregulationsinplacetoensurethesafeandethicalcreationofhumanlivesbydonorconception.”

“Istronglysupportadditionalreviewofthedonorgameteindustry.IbelievetheFDAshouldengageinfurtherinvestigationofthebusinessofegg,sperm,andembryodonationasabasisfordevelopingfurtherregulationandoversight.Asanacademicwhohasstudiedandwrittenarticlesandbooksaboutthefertilityindustry,Istronglyurgeyoutoundertakeadditionalreview.Thankyou.?”

”Ireportedtothespermbankthatmychildwasdiagnosedwithcancer(lymphoma/leukemia)thesameweekofhisdiagnosisandprovidedproof,sotheycouldreportitbacktothedonorandtotheotherfamilieswhohadusedthesamedonor.Almosttwoyearslater,noneofthe11familiesIamincontactwithhavebeennotifiedaboutmyson’scondition.”

AndIalsosubmittedacomment:

HereissomerecentinputfromfamilieswhousedCaliforniaCryobank(fromtheDonorSiblingRegistrySecretFacebookpage,January2017).Thisinformationillustratesthedishonestmannerinwhichspermbanks(CaliforniaCryobankisnotuniqueinthisrespect)disseminateinformationaboutlimitsonnumbersofoffspringforanyonespermdonor:

“Theytoldmein2011itwaslimitedto20familyunitsbuttheyarenowsayingithasincreasedtobetween25and30familyunits.”“In2011CCBalsotoldmethattheylimitfamiliesofopeniddonorsto20andanonymousdonorsto25.““Backin2004Iwastoldthateachdonorhad10vialsandthatwasit.““WhenIusedCCBin1999theytoldmelimitedto30families-asofrightnowthereare30kids.““Inabout1990theytoldmeten.Iguessitjust

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dependsonwhoanswersthephone!”“In1991theysaid1or2birthswasthelimit.”“In2005weweretoldthelimitperdonorwastenfamilies.““In2010,whenwechoseourCCBdonor,weweretold10familiesmax.”

Note:WhenaprospectivedonorcalledCCBlastsummerandaskedthisquestion:“Whatisthemaximumnumberofchildrenthatyouallowperdonor?CaliforniaCryobanktoldtheprospectivedonor,“12to15familyunits.”

Sperm and Egg Donation: 10 Things Your Doctor, Clinic, or Sperm Bank Won’t Tell You

1. Mostdonors*andrecipientsarenotproperlyeducated,counseled,orinformedbeforehandabouttheneedsandrightsofthechildrentheyarehelpingtocreate.Thisincludestheimportanceofconnectingwithfamiliestoshareandupdatemedicalinformation,andtheinnatedesireofdonorconceivedpeopletoknowabouttheirfirst-degreegeneticrelatives.

2. Thereisnocomprehensivemedicalandgenetictestingconductedbyclinicsandspermbanks.IntheUStheFDAonlymandatesforSTDtestingandforahandfulofotherdiseases.Somefacilitiestestsomedonorsforsomediseases.TestingforSTD’sdoesnothingtopreventtransmissionofgeneticillness.Propergenetictestingofalldonorsiscritical.HundredsofmedicalandgeneticissueshavebeenreportedtotheDonorSiblingRegistry,manyofthemhereditary.

3. ThereislittletonoregulationoroversightoftheUSreproductivemedicineindustry,whichshipsspermtoover40countriesaroundtheworld(sothisisaglobalissue).Thisindustryisnotrequiredtomaintainorupdaterecordsregardinggeneticdiseasetransmittedtodonoroffspring.Informationaboutinheritedphysiologicalandpsychologicalpredispositionsareasignificantelementinobtainingappropriatemedicalcare,particularlyinpreventativehealthcareincludingscreeningsandpreventativemedicine.Examples:geneticpredispositionforheartdisease,mentalillness,orCysticFibrosis.Adonor’smedicalprofileismerelyaself-reportedfamilyhealthhistory,alongwithasnapshotofonedayinthelifeofahealthyyoungadult.84%ofsurveyedspermdonorsand97%ofsurveyedeggdonorswerenevercontactedformedicalupdates.

4. Noaccuraterecordkeepingexistsabouthowmanyoffspringareconceivedforanyonedonor.

Records,ifanyarekept,areincompleteregardingthenumberofoffspringcreatedfromeachdonor,asallreportingisvoluntary.Therearemanylargecohortsofhalf-siblings,somenowaslargeas200.Ifurgentmedicalissuesarise,familiescannotthenbenotified.Manyfamilieswhoareonfilewiththespermbanksclaimthattheywerenevernotifiedaboutmedicalandgeneticillnessreportedtospermbanksbydonorsandbyfamilieswhousedthesamedonor:theylearnaboutthegeneticandmedicalissuesbyconnectingwithotherfamiliesontheDSR.

5. Aroundthreequartersofsurveyeddonoroffspringadvisethatprospectiveparentsdonotuse“anonymous”donors.Manycountrieshavebannedanonymousdonationandweallneedtoaskthequestion“whatisinthebestinterestsofthechildtobeborn?”“Anonymity”isnevertheanswer.ManyheartfeltstoriesandtestimonialsbydonoroffspringhavebeenreportedtotheDSR.Manyparentsusedonorconceptioninsteadofadoptionbecauseageneticconnectionisimportanttothem,butthennegatetheimportanceofthatverysamegeneticconnectionwhenitinvolvestheirchild’srelationshiptothe“donor”,theotherhalfoftheirchild’sgeneticfamily,ancestryandmedicalhistory.

6. Manydonorconceivedchildrenlongtoconnectwiththeirhalfsiblingsandtheirdonorslongbeforetheyare18.18isanarbitrarynumbersetbyclinicsandspermbankstoprotecttheirownfinancialliability.Thisagelimitisnotbackedupbyanypsychologicalresearch.Quitetothecontrary,researchhasshownthatmanywishtoconnect,andhavemadesuccessfulconnections,longbeforetheageof18.ThousandshavebeendoingsoontheDonorSiblingRegistryformorethan16years.Manyeggclinics(notonespermbank)havebeenconnectingdonorsandparentsontheDSR

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(anonymously)frompregnancyorbirthforyears.Thisallowsparentsanddonorstoshareandupdatemedicalinformationrightfromthestart,anditallowschildrentohaveaccesstotheirbiologicalparentsfromthemomenttheystartaskingquestions.

7. DNA:DonorsNotAnonymous.Anonymityisathingofthepastandshouldn’tbepromisedtoanydonorortoanyprospectiveparent.Spermbanksandeggclinicsneedtostopthefallacyofselling“anonymous”donors.DonorconceivedpeoplehavebeenlocatingtheirbiologicalparentsviaDNAtesting(alongwithGoogleandsocialmedia)since2005,asreportedinNewScientistMagazine,sothisisnotnews.DonorsdonotneedtotesttheirownDNAinordertobeeasilyfoundbyoffspringand/ortheirparents,andthereisnolawprohibitingcontact.Donorsmustbewillingtobeknownbyanyoffspringtheyhelptocreate-andlongbeforeoffspringturn18.

8. Becauseofthisendtoguaranteedanonymity,non-disclosureisnolongeranoption.Manypeoplewhoswabbedtheircheekstolearnmoreabouttheirancestryandfamilytreehavebeenshockedtofindoutthattheyarenotgeneticallyrelatedtooneoftheirparents,becausetheirparentsusedadonor,andkeptitasecret.Manyhavealsobeenshockedtoconnectwithhalfsiblings.Findingoutinthiswaythatyourparentshavenotbeenhonestcanwreakhavoconadonoroffspring’ssenseoftrustandstabilityinthefamily.Ifyouareaparentwhohasyettotellyourdonorconceivedchildthattheywerecreatedwithhepofadonor,nowwouldbethetimetohavethatconversation,andwecanhelpwiththat.It’snevertoolatetotell.

Familysecretscanbetoxic,andyourdonorconceivedchildhasarighttoknowaboutthemethodologyoftheirconception,abouttheirmedicalbackground,andabouttheirancestry.Ifparentshavenottold,thereisusuallysomegriefassociatedwithinfertilitythatisunresolved,orthereisanunfoundedfearaboutanon-bioparent’srelationshipwiththechildbeingnegativelyaffectedbythetruthcomingout.

Parents:Thisshouldn’tbeaboutyourunresolvedgrief,yourhesitations,oryourfears.Thisshouldbeaboutwhat’sinthebestinterestsofyourchild,andtheirrighttothetruthaboutthemselves,

theirmedicalbackground,theirancestry,andtheirgeneticrelatives.Aftertelling(orafteryourchildrenfindoutviaDNAtesting),pleasedonotaskyourchildrentokeepthe“secret”.Thismayhavebeenyoursecret,butitshouldn’tbetheirs.Thistypeofresponsecouldcauseunnecessaryresentment,anger,andupset.Secrecyimpliesshame,anddonoroffspringhavenothingtobeashamedof,mostcertainlynotthemethodologyoftheirconception.Getyourselfsomecounselingtohelpworkthroughyourunresolvedgrief,fear,orshamesothatyoudon’tpassitalongtoyourchildren.Youare,andalwayswillbeyourchild’smomordad.Youcanworkonbecomingamoreconfidentparent,secureintheknowledgethatyourchildknowingthetruthwon’trattlethestrongparentalfoundationthatyouhavebuilt.

9. Tellingisjustthebeginning.Manyparentsthinkthatjustbecausetheyhavetoldtheirchildabouthis/herorigins,thatthiswillbeenough.Manythenminimizetheimportanceofthe“donor”,thinkingthatbecausetheydon’tfeelDNAisimportant,thentheirchildshouldn’teither.ParentsneedtoknowthattheirchildmayviewthisinvisibleonehalfoftheirDNAtobebeaveryimportantpartoftheiridentityandtheymayfeelanurgencyaboutgatheringinformationandalsoconnectingwiththeirpreviouslyunknowngeneticrelatives.DNAisn’ttheonlywaytomakeafamily,buttheimportanceoffamilialDNAconnectionscan’tbedenied.Honoryourchild’scuriosity,andletthemknowthattheyhaveyourfullsupportastheyventureoutformoreinformation.Don’tbehaveinawaythatforcesyourchildtosearchforanswersbehindyourback,asthatcanonlycreatemoreresentment.Theyneedyoutobeontheirteam.

10. Thechoicesyoumakeearlyonaboutcreatingyourfamilywithadonorwillaffectyourdonorconceivedchildformanydecadestocome.Trytothinkbeyondyourownneeds,andeducateyourselfaboutwhatwenowknowtobetruefordonorconceivedpeople.

TheDonorSiblingRegistry(DSR)isaUSbased,globalregistrywithamissionofconnecting,educating,andsupportingallthoseinthe“donorfamily”.The501(c)3non-profitorganizationfacilitatesmutualconsentcontactamongdonors,recipientsandoffspring,sothattheycanshareimportantmedicalinformation,

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andexplorenewrelationships.Sinceit’sinceptionin2000,theDSRhashelpedtoconnectalmost14,000ofits52,500memberswiththeirfirst-degreegeneticrelatives.

*Nooneis“donating”anything,asalleggsandspermaresold.

FINDING OUR PEOPLE: Wendy and Ryan Kramer’s Story

FindingOurPeopleGuestBlogbyEllenS.Glazer

Assomeoneinveteratelycuriousaboutpeople’slives,Ihit“paydirt”recently.NotonlydidIgettohearafamilystoryinsomedetail,butitwasnot“justany”familystory.My“paydirt”tookmetoaseriesofinterviewswithWendyKramer.Ihadtheincrediblepleasureofhearingaboutherexperiencesasamomhelpingherson,Ryanfindhispeople.Asthesearchunfolded,itwasclearthatthesewereWendy’speopleaswell.Hereisabitaboutwhywehadtheinterviewsandhowtheyworked.

Firstthewhy…FormanyyearstheDSRwebsitehasreceivedandsharedfamilystoriesofsearch,connection,kinshipredefined.Countlessstorieshavebeenoffered,butonehasremainedlargelyinthebackground.IknowthatasaboardmemberandreaderofthebookFindingOurFamilies:AFirst-of-Its-KindBookForDonorConceivedPeopleandTheirFamilies,IknewbitsandpiecesofWendyandRyan’sstory,butIhadnosenseofatimeline,ofhowmuch—ifatall—thewebsiteassistedRyaninhispersonalsearch,aboutwhat–ifany—relationshipsRyanhadwithgeneticsiblings,hisdonor,extendedfamily.TherewerepiecesofinformationbutIhadlotsof

questions.Admittedly,I’mafamilystoryjunkie,butinthisinstance,IwasprettysureIwasnotaloneinmycuriosity.Frommyperspective,thiswasastoryworthtellingandlongoverdue.

Nowthehow…Thiswasthefunpart!Idon’twatchTV,buthaveheardfromsomanyothersofthethrillofmovingfromepisodetoepisodeofanexcitingandengagingseries.Whoamongushasnotknown–orbeen—someonetetheredtoMadMenorOrangeistheNewBlack.Overthecourseoffiveorsixweeks,Ihadmyownthrillofgoingepisodetoepisode:formeitwastheWendyandRyanstory.

IsupposethatWendyandIcouldhavecoveredtheKramer’sstoryinonelong,intensephonecallbutthatwouldn’thaveworkedforme.InsteadIneededtotakeeachepisodein,writeitup,marinateonwhatI’dlearnedandthenmoveon.ItwasclearthateachtwistandturninRyanandWendy’sjourneytaughtthemnewlessonsaboutfamilyandthattheselessonswerewellworthpassingontoothers.Iwantedtonotonlyhearthisfascinatingstorybuttomakesenseofit.AndsoitwastothisendthatWendyandIspokeonceeachweekforaboutanhouroverfiveweekspan.Irememberlookingforwardtoeachcall,eagertofindout“whathappenednext”andhowitwasallunfolding.

Ourconversationscontinueduntilthestorywascurrentandtherewasnothingmoretotell—atleastnotyet.HopefullyWendywillsharenewchaptersintheirstoryastheyunfoldandIwillhavetheopportunity—Ihope—toaddthemtothenarrativeyouwillseeontheDSRwebsite.Fornow,IhopethatyouwillfindFindingOurPeople(thelinktothepdfcanbefoundhere,ontheDSR’sBoardMemberPage)asmovingandcompellingasIdid.Itmorethansatisfiedthisfamilystoryjunkie.

-EllenGlazer,November2016

(ThisstorybyEllenGlazercanbefoundinitsentiretyatthebottomofthisdocument).

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The Ambiguity of “Open” Sperm Donation

JANVANEYCK:VIRGINANDCHILDWITHSAINTSAND

DONOR-EARLY1440S

Yetagain,thehighlyunregulatedmedicalfieldofspermdonationisfailingparents,donors,andthedonorconceived.Thistimewe’recallingattentiontotheirinabilitytomanageortoofferanyconsistencywithnon-anonymousspermdonationpracticeandpolicy.Theconceptissimple:a“donor”(nooneisdonatinganything,amanispaidforhissperm)makesnon-anonymousspermdonations(heagreestohavecontactwiththechildrenhehelpstocreatewhentheyturn18),parentswantingachildpurchasethatdonor’ssperm(mostvialsofnon-anonymousspermarealotmoreexpensivethananonymoussperm),achildisconceived,andthespermbankmakesmoney.

Wearenowhearingfromfamilieswhopurchasednon-anonymoussperm,onlytofindoutlateronthatthisisnotthecase.Spermbanksarefailingtoprovidethatwhichboththedonorandtheparentsagreedto.

Thisissuehighlightstheneedtolegallybandonor“anonymity”soasnottoleavetheinterpretationofanon-anonymous(oftencalledan“open”ora“willing-to-be-known”)donor,toeachdifferentspermbank(oreggclinic),ortothewhimofyoungdonors,manywhodonatewhileincollegeandwhoareneverproperlyeducatedorcounseledabouttheneedsoftheresultingchildrentheyarehelpingtocreate.

Werecentlyheardfromtwoparents(differentdonors)whousedPacificReproductiveServices(PRS):

“Mysonis19andlastyearcontactedPRStobegintheprocessofcontactinghis“willingtobeknown”donor.PRStoldmysonhisdonorwasanonymousandhecouldn’tcontacthim.Ihadallmypaperworkthatclearlystatedotherwise.Uponfurtherinvestigation,PRStoldusthedonorhadchangedhisstatusfrom“willingtobeknown”to“anonymous”onemonthafterIconceived.”

“Throughyourwebsite,wehavemadecontactwithmanyfamilieswhousedourdonor.Ourdaughterwillbe18nextyearandwaslookingforwardtogettingmoreinformationaboutthedonoratthattime.Weunderstandfromoneoftheotherfamiliesthatthedonorwishestochangehisstatustoanonymousandhasrefusedcontact.Wewerealsotoldthatthespermbank’sattorneysarepreparingalettertosendtous.Needlesstosay,we’reterriblydisappointedandhaven’tfiguredouthowtobreakittoourchild.”

ManymorePRStestimonialshere.

APRSparentreceivedthisexplanationfromPRS:

‘About“WillingtobeKnown”Donors:Mostofourdonorsarewillingtobeknowntothechildrenconceivedasaresultofartificialinseminationwiththeirdonatedsemenwhenthechildhasreachedthelegalageofconsent(18yearsoldinthestateofCalifornia).ThechildmustcontactPRStoinitiatethedisclosureofthedonor’sidentity.PRSwillattempttoarrangeameetingbetweenthedonorandthechild.IfPRSisunabletoarrangesuchameeting,thedonor’sidentifyinginformationwillbereleasedtothechildtoenablethechildtopursuethisprocessonhis/herown.Thechildwillsignacontractspecificallyrequestingthats/herespectthedonor’sprivacyinpursuingameeting(i.e.,notdiscussingthepurposeofthemeetingwithanyoneexceptthedonorhimself).Onceameetinghasoccurred,thedonor’sobligationhasbeenfulfilled.PacificReproductiveServicescannotguaranteethatthemeetingbetweenthedonorandthechildwilloccur.PRSmustrely

21

solelyuponthedonor’srepresentationandsignedcontractthatheiswillingtobeknown.’

Somedonorswhoeitherchoseanonymity,orwhowerenevergivenachoice,becomeinterestedinconnectingwiththechildrentheyhelpedtocreate.

FromtwoFairfaxCryobankdonors:

“Itoo,donatedmorethan20yrsagoatFairfax.I’vetriedallmethodsofwhichIcouldthinktogetFairfaxtoopenmyrecordtoanyoneseekingit.Theydeniedmeeverytime,andhavecontinuedtodenyme.Theywouldn’teventellmemyowndonornumber.Fortunately,onebiologicalsonfoundmeontheDSR.”

“FairfaxlistedmeasanonymouseventhoughIhadsignedseveraldocumentsthatallowedformyinformationtobegivenout.”

ManymoreFairfaxCryobanktestimonialshere.

FromthreeNewEnglandCryogenic(NECC)parents:

“Ichosea“yes”donor/donorreleaseoption,havepaperworksayingtheinfowillbereleasedtomydaughteronceshe’sofage,yettheownerofthebankisnothonoringtheagreement,andwouldn’tevenreturnaphonecallformonths,thenafteroneokay/civilconversation,inwhichsheagreedtocallmebackwithnoinformation...completelydisappearedandnevercalledback.”

“WehavebeentryingtoworkwithNECCtocontactouridentityreleasedonorformonthsnowandarenothavinganyluckhearingbackfromthemastothestatusofourrequestexceptthattheyhavethepaperworkneededtomoveforward.Phonecallsandemailsarenotreturned.”

“IamgoingthroughthiswithNECCnow!ItisdraggingouttomonthsandIcan’tgetanyinfofromthemastowhatistakingsolong.Theyactedlikethiswasthefirstrequestfordonorcontacttheyhadgotten.....”

ManymoreNECCtestimonialshere.

FamilieswhousedCaliforniaCryobankshouldknowabouttheir“open”donorpolicy:AcoupleofyearsagoIaskedCCBaboutthepolicy,andwastoldthatwhenachildof18requestedcontact,thedonorsweresentaletteronlyaskingthemto“update”theirinformation,notmentioninganythingaboutachilddesiringcontact.So,ifadonorreadtheletterandthought“I

havenothingtoupdate”he’dlikelyjusttosstheletter.Hewouldneverknowachilddesiredtomeethim,andthechildwouldthinkthatthedonorrefusedcontact.SoIaskedCCB:“Yourrepsaidthatwhenthereisarequest,donorsaresentaletterto‘update’theirfile.Theyarenotactuallynotifiedthatachildactuallywantstomeetthem.Isthistrue?Thiscouldexplainthelowresponserate,asthedonorsarenotmadeawarethatachildisactuallywantingtomeetthem.”

ThereplyIreceivedbackfromCCB:

“Oursystemissetuptoprotecttheinterestsofallparties.Wecontactthedonorsviamailand/oremail.Ifhechoosestorespond,weexplainthesituationandaskifheisinterestedinmovingforwardwiththecontact.Tosendaletterwithinformationaboutanoffspringoutofthebluecouldbeveryjarring,irresponsible,andcouldultimatelyillicitanevenlowerresponseratefromthedonorswhodonotunderstandthespecificsoftheinteraction.Wedon’tphonethemuntiltheygiveustheok,becauseiftheyhaveawifeorchildrenwhocouldanswerthephone,itcouldputtheminanawkwardposition.”

FromaCaliforniaCryobankdonor:

“AsanIDReleaseDonormyadultoffspringshouldbeabletocontactCaliforniaCryobank,say“Hey,#XYZWwasmydonor.Pleasegivemehiscontactinformation.”EverytimeIhavemovedorchangedphonenumbersoremailaddressesIhavedutifullyupdatedCaliforniaCryobank.SoIaskedoneofmy20yearoldkids(whoImetthroughtheDSR7yearsago)totestthespermbank.Hecalledthem,andwastransferredtovoicemail.Ifigurednobodywouldcallhimback,butloandbeholdtheydidcallhimtoday.Theyaskedhimabunchofquestionstoprovehisandhismother’sidentity,thentoldhimIwasananonymousdonor(Lie)andtheydidn’thavemycontactinformation(Lie)buttheywouldtrytogetintouchwithme.”

ManymoreCaliforniaCryobanktestimonialshere.

Thespermbankshandle“open”donationsdifferently.Some,likeCaliforniaCryobank,sendthegenericlettertodonorsaskingthemto“updatetheirinformation”,andiftheydon’thearback,that’sconsidereda“no”.Manyspermbankssaythattheywill“try”tocontactdonorstoseeiftheyarestillopentocontactwithoffspring.Sometimestheycan’tfindthedonors,and

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sometimestheyneverreplytoan18-year-old’srequestforcontact.

Idon’tthinkthespermbank’swebsiteorcontractverbiagemattersmuchatall.Weknowofdonorswhotriedtochangefromanonymoustoopen,butcouldn’t.Andweknowaboutdonorswhoare“open”butneverrespondtocontactrequests.Wealsoknowabout“open”donorswhooutrightrefusecontact.Andweknowaboutdonorswhochoseanonymityandwho,whengiventheopportunity,areveryopentoestablishrelationshipswiththeirbiologicalchildren.

Fromtwoformerlyanonymousdonors:

“Readuponthecurrentwisdomandknowledgethat’sdevelopedovertheyears.There’smoretoitthanmakingafewbucks.”

“Youareinvolvedinthecreationofrealpeople,notanabstractconcept.Theywillliveandbreatheandgrow,andtheywillwanttoknowaboutyou.Bereadytohaveabigheart.”

Whenchoosingaspermbank,it’simportantforprospectiveparentstoresearchbeyondthemarketingmaterialsonaspermbank’swebsite.TheDonorSiblingRegistryhasa“WhichSpermBank”pagewhereusertestimonialscanbefound.

MysonRyanwasthefirstdonorconceivedperson(thatweknowof)tolocatehis“anonymous”donorvia

DNAtestingin2005.Manydonorswhochoseanonymityareindeedopentocontactwhengiventheopportunity,andluckily,ourswas.Ryanandhisbiologicalfather(below)haveenjoyedmorethanelevenyearsofgettingtoknowoneanotherandhehasalsobeenabletoestablishawonderfulrelationshipwithhisbiologicalgrandparents.NoneofthatwouldhavebeenpossibleifnotforcommercialDNAtestingcreatinganavenueseparatefromthespermbank’sanonymitypolicies.

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No Laws Prohibit Donor Recipients from Reaching Out to Donors

Irecentlyheardfromawomansofearfulaboutspermbankrepercussionsthatshewouldn’tmakeaphonecalltotheDonorSiblingRegistry(DSR)forfearofhavingthecallsomehowtracedbyherspermbank,andsheevenopenedupananonymousemailaddressjusttoaskmeaboutsigninguptotheDSRandcontactingherdonor.

Sheincludedthisspermbankcontractverbiage:

PurchaseragreesthatPurchaserhasnorighttolearntheidentityofadonorandwillnot,directlyorindirectlythroughathirdparty,makeanyattempttocontactadonor.

Thisappearstobenomorethanafeartactic,asweknowofnooneeversuedbyaspermbank/clinicforreachingouttotheirdonor(byaparent)ortotheirbiologicalfather/mother(byadonorconceivedperson)eitherviatheDSRorthroughanyothermethod.(Wehave16yearsofexperienceandmorethan52,000membersontheDSR.)

Manyeggandspermdonorsandrecipientparentshavebeentoldbytheirdoctors,clinics,agenciesandspermbanksthattherearelawsprohibitingdonorsandparents/offspringfromconnecting.Recently,aparentsigneduptotheDonorSiblingRegistrywhousedCryogenicLaboratories(Fairfax/GIVF/CLI,shippingtoCanadianandworldwideclinics),saying,“ifthelawschange,thisdonormightbewillingtomeethisoffspring.”WhenIquestionedheraboutit,shesaidthatshewastoldbyCLIthattherewerelawsprohibitingcontactbetweendonorsandfamilies.

Therehaveneverbeenanylawsthatprohibitcontactbetweengeneticrelativesformedviagametedonation.Anysuchagreementsignedbyrecipients

anddonorsforbiddingcontactisthereforeinoperative.

Anattorneywhoisalsoadonorconceivedpersonweighsinonthetopic:

Familylawtrumpscontractlaw:Familylawalwaysputsthebestinterestofthechildbeforeall.Aparentcan’tsignacontractthatrestrictswhatisinthebestinterestofthechild.Nocourtwouldruleagainstthisasit’sunenforceable.

Itwouldseemthatthespermbanksandeggclinicswhocontinuetospreadthisfalseinformationhavedonesoonlytoprotecttheirownliabilities.Forexample,ifaspermbankpromisesdonorsorfamiliesalimitof10or20childrenperdonor,revelationsthattheactualnumberisinmanycasesconsiderablyhigher(inoneknownexample,around200)wouldshedlightonthegrossshortcomingsoftheirrecordkeeping.Ifmedicalissuesarereportedtoaneggclinicorspermbankandnotsharedamongfamilies,orifthesaleofgametesfromwhichseriousmedicalissuesareknowncontinuestobesoldandsickchildrenareborn,thesubsequentfacilityliabilitycouldbesevere.

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AsadonorIupdatedmymedicalrecordsbetweendonations.TheydidnotpassthoseupdatesontopreviousrecipientsNORrecipientsthatcameafterthoseupdates.Ionlyknowthatbecauseafamilythatcameafterthatinsistedoncontact.Sheshowedmealloftheinfoshehadgottenonme.Thoseupdateswerenotincluded.AnyoftheupdatesIhavedonesincehavenotbeenpassedontohereither.

Thereisalsotheriskthatfamiliesmightdiscoverthatdonorswerenotnecessarilyhonestwithself-reportedhealthandeducationinformationtheyreportedontheirdonorprofiles.

AllofthesescenariosarefrequentlyencounteredbyfamiliesontheDonorSiblingRegistry,underscoringtheneedforhonesty,accuraterecordkeeping,andaccountabilitybyspermbanksandeggclinics.Thesefacilitiesneedtostopfalselythreateningfamiliesanddonorswhowishtoreachouttooneanother.Mutualconsentcontactcanbemadebetweenanyoftheparties,atanytime.ConnectingwithfirstdegreegeneticrelativesviatheDSR,socialmedia,GoogleorDNAtestingiscompletelylegal.

It’stimefortheseeggandspermsellingfacilitiestostopworkingsohardtokeepdonorsandrecipients

fromeachother,andstartsupportingandpromotingcontractsthatallowcontactrightfromthestartontheDonorSiblingRegistry.

WhatDoesARelationshipWithTheDonorSiblingRegistryDoForYourSpermBank/EggClinic/Agency?

CONTACT:Theissueofcontactbetweenthedonorandtherecipientfamily(andhalf-siblingfamilies)isremovedfromthehandsandfocusofthefacility.Messages,photosandmedicalinformationcanbeshared,allwhileremainingprivate.

CONSENT:SincetheDSRreliesonmutualconsent;thefacilitydoesn’tneedtobeworriedaboutprotectinganyone’sprivacy.

CHOICE:Eachpartycanremainanonymousiftheychoose,sothedecisionisultimatelyinthehandsofthoseinvolved.Eachpartycandecidehowmuchinformationthey’recomfortablesharing.

CURRENTMEDICAL:ThesharingandupdatingofmedicalrecordshappensontheDSR,sothefacilityhaslessworksincetheyhaveprovidedatoolformedicalupdates.

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“Donor Babies” are Sometimes Grandparents!

WhilehikingonatrailnearmyhomeinColoradolastmonth,Imetupwitha57yearoldmanwhorecognizedmefromtheDonorSiblingRegistryandidentifiedhimselfasa“donorbaby”.Thisgotmethinkingaboutallthe“donorbabies”outtherewhoarecloseto,oralreadyatgrandparentage.

Theutilizationof“donated”gameteshastakendecadestobepubliclytalkedaboutasanacceptedmethodologyforachievingpregnancy.Today,thenumberoffamiliesusing“donated”(nooneisreallydonatinganything,asallgametesaresoldandthenbought)spermoreggshaveskyrocketed.TheDonorSiblingRegistry(DSR)members:donors,parentsanddonoroffspring,arenowatmorethan51,400.NoonecanknowforsurewhatpercentageoftotalworldwideoffspringaremembersoftheDSR,asnosuchrecordsarekept.

ThemajorityofdonoroffspringpostedontheDSRareundertheageof18.However,theDSRdoesincludemanydonorconceivedmembersbornmorethan50,60andevenmorethan70yearsago.TheoldestdonorconceivedDSRmemberwasbornin1943,backwhentheuseofdonorspermwasasecretiveandoftenshamefulprocedure.Parentswereadvisedtonevertellanyone,noteventheirownchild.Itwascommonforparentstobetoldtogohomeandhavesexsothattheycouldalwaysthinkthatthehusbandjustmightbethebiologicalfatherofthechild.Familysecretsdohaveawayofbeingdispelledthough:deathbedconfessions,foundpaperwork,chattyrelatives,andnowascommercialDNAtestingbecomesmorepopular,manyarenowshockedtodiscoverthesecretthattheirparentshadkeptfordecades.

Whilewestronglyrecommendthateveryonepostsonthesite,manyDSRmembersneveraddtheirpostings,soherearesomeveryconservativenumbersaboutolderoffspringages:

• 3offspringintheir70s• 42offspringintheir60s

• 72offspringintheir50s• 204offspringintheir40s

Therecommendedsecrecywasoftenrootedinthefactthatitwasnotuncommonfordoctorstoinseminatepatientswiththeirownsperm,evenintothe1980s.Duringthistime,thepatientsweremostlywomenmarriedtoinfertilehusbands.Thesedoctorsweresecretly(thecoupleswereoftentimestolditwasa“medicalstudentintheotherroom”)inseminatingtheirpatientsfordecades.Sometimesitwasalabworkerinthefacility,andinoneknowncase,itwasthedoctor’sweekendhandymanwhodonatedforthreedecadesafterhavinghisownchildreninthedecadebeforeheevenstarteddonating.

Havingadecadeswidespreadbetweenhalfsiblingsisnotuncommon.DonorconceivedpersonBarryStevens,nowinhis60’s,reportsthathehaslocatedhalfsiblingsbornbetween1944-1972.Fourdecadesofoffspring,allsharingthesamebiologicalfather:theirmother’sdoctor.

DonorconceivedpersonBillCordrayreports,“Myfather(mymother’sgynecologist)wasbornonthelast

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dayof1907.HisoldestsonwasborninFeb.1937.IamtheoldestDIadult,borninJuly1945andmyyoungestnewDIbrotherwasborninMay1966.”Hegoesontosaythatheknowsof,“...twoorthreeotherswhowerebornayearorsoearlierthan1945.”Billnotesolderdonorconceivedpeoplethatwereknownaboutbackinthe1980’s,“Accordingtowhat[authorAnnetteBaran]toldme,therewasoneDIadultinhersmallstudywhowas68atthetimeshewroteLethalSecretsin1987.”

ManyconferencesthatIseestilladdressspermdonation,andeveneggdonation,(whichhasnowbeenaroundformorethan30years),as“new”reproductivetechnologies.Sowhilemanyoftheissuessurroundingtheethicsofthereproductivemedicineindustryarenewtothepubliceye,thesemethodologieshavebeenaroundforalongtime.Thesearenot“new”discussionstous,thestakeholders:parents,donorsandoffspring.Astimesgoeson,we’llcertainlycontinuetohearmorefromtheresultingchildren,asmoreofthembecomeoldenoughtocontributevaluablepublicinputregardingtheveryindustrythathelpedtocreatethem.

Andfinally,itshouldberecognizedthatit’snotjustthedonor-conceivedpeoplewhoarebecominggrandparents,it’salsothedonors,manyofwhodonatedbackwhentheywereincollege.

Thisdonorhadtheopportunitytomeethisfirstgrandchildonthesamedaythathemethisbiologicaldaughterfortheveryfirsttime.Sincethen,he’sbeenabletowelcomehissecondgrandchildintotheworld,becominganimportantfigureinthelivesofhischildandgrandchildren.

Themorethan13,600donor-offspringandhalf-siblingrelationshipsformedontheDSRhavebecomemultilayeredovertime,andcanspangenerations.Thisnumberwillcontinuetogrowandtheserelationshipswillcontinuetoenrichthelivesofbothdonorsandthedonorconceived,solongastransparencyanddisclosurecontinueonasacommongoal.Endingthepromiseofanonymitytobothdonorsandprospectiveparentswouldfurther“colorin”themissingpiecesofgenetichistories,andbringemotionalhealthandevenphysicalpeaceofmind,wellness,andaboveall,happinesstothedeservingdonorsanddonorconceivedpeople.

*CartoonbyJenMoore

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A Multi-Billion $$ Unregulated Industry With No Oversight. What Could Possibly Go Wrong?

Manyspermandeggdonorsandrecipientshavebeentoldbytheirdoctors,fertilityclinics,andsperm/eggbanksthattherearelawsineffectprohibitingdonorsandparents/offspringfromconnecting.Recently,aparentwhousedCryogenicLaboratories(CLI)(1)joinedtheDonorSiblingRegistry.Shesaid,“ifthelawschange,thisdonormightbewillingtomeethisoffspring.”WhenIquestionedheraboutit,shesaidthatshewastoldbyCLIthattherearelawsprohibitingcontactbetweendonorsandfamilies.

Therehaveneverexistedanylawsthatprohibitcontactbetweengeneticrelativesformedviagametedonation.

Thespermbanksandclinicswhohavespreadthisfalseinformationhavedonesoonlytoprotecttheirownliability.Forexample,ifaspermbankpromisesdonorsorfamiliesalimitof10or20childrenperdonor,revelationsthattheactualnumberinmanycasesisconsiderablyhigher(forexample,50,150,or200children)wouldexposethegrossshortcomingsoftheirrecordkeepingandtheirhonesty.Donorsshouldknowthatdonatingfor5years,2-3timesperweek(whichisnotuncommon)could,intheory,resultin

thousandsofsellablevialsofspermbecauseeachdonationcanproduceupto24sellablevialsofsperm.Additionally,spermbankshavebeenknowntoselladonor'sspermformorethantwodecades.

Furthermore,ifmedicalissuesarereportedandnotsharedamongfamilies,orifthesaleofspermwithknowngeneticmedicalissuescontinuestobesoldandchildrenwithgeneticabnormalitiesareborn,thesubsequentspermbankliabilitycouldbesevere.

Familieshavealsodivulgedthatsomedonorswerenotnecessarilyhonestwithself-reportedhealthandeducationinformationdisclosedontheirdonorprofiles.Theseissues,(andothers)arefrequentlyencounteredbyfamiliesontheDonorSiblingRegistry,underscoringtheneedforbothaccuraterecordgatheringandrecordkeepingbyspermandeggfacilities.

Sincespermbanksandeggclinics/banks“selfregulate”itisquiteobviousthatsomeregulatoryentityneedstostepinandprovidesomeproperoversight.Regulationsareneeded;lawsareneeded.Thisindustryneedstobemonitoredandheldaccountable.

WhiletheFDAmandatestestingofdonorsforSTD's?andahandfulofotherdiseases,donorsreporttotheDonorSiblingRegistrythattheywerenevergivenphysicalexaminations,andallmedicalinformationisselfreported-nomedicalrecordsaretransferredtothespermbanks.

SeanTiptonoftheAmericanSocietyforReproductiveMedicine,theentitythatissuesunenforcedguidelinesfortheindustry,continuallyframesthisdiscussionofregulationasoneof“reproductiverights”.He

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frequentlysaysthatregulationwouldkeepparentswhodesperatelywantchildrenfromhavingthem.Thisisascaretacticheusestokeepregulationoutofthespermandeggdonorindustry.It'sthistactic,alongwithlobbyingandspendingmoney,thathaskeptregulationoutofthereproductivemedicineindustry.Thisisnotaboutreproductiverights,thisisaboutanunregulatedindustrythatisfertilegroundforunethicalandirresponsiblepractices.

Lawsorregulationsareneededregarding:

1. Record-keepingondonors,parents,andoffspring

2. Numberofchildren?borntoadonor

3. Limitsonthenumberofvialssoldforeachdonor

4. Searchingfor,andcontactingbiologicalrelatives

5. Donorsdonatingatmorethanoneclinic

6. Comprehensivemedicalandgenetictestingofdonors,e.g.fullgenomesequencing(nowbelow$1500)

7. Creatingasystemwherethesharingandupdatingofmedicalinformationamongfamilieswhohaveusedthesamedonor,andeventhedonorhim/herselfisavailabletoall

8. Informedconsentinspermandeggdonationandspermandeggpurchase.Boththedonorandtherecipientshouldknowthatformorethan11yearsDNAtestinghasmadeanonymityathingofthepast.Anonymityshouldn'tbepromisedtoanyone.

Propereducationshouldberegulatedandmandatory.

1.ParentcompanyGIVF:FairfaxCryobank/CLI:ShipstoworldwideclinicsincludingCanada.

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A Brief History of Donor Conception

EarlyHistory

1322

Artificialinsemination(referredtoasAIuntilthe1980s)wasfirstusedsuccessfullybytheArabsonmares.

1425-1474

UnofficialhistoryclaimsthatthefirstattemptstoartificiallyinseminateawomanweredonebyHenryIV,nicknamed“TheImpotent”.

1784

ThefirstartificialinseminationinadogwasreportedbythescientistLazzaroSpallanzani(Italianphysiologist,1729-1799).Thisinseminationresultedinthebirthofthreepuppies62dayslater.

1799

Thismethodofconceptionwasfirstattemptedonahumanbeingintheyear1799bytheEnglishphysicianDr.JohnHunter.

JohnHunter(1728-93)wasabrilliantScottishsurgeonknownforpioneeringresearchintovenerealdiseases,childdevelopmentandthelymphaticsystem,amongmanyotherthings.Althoughhelikedtoexperimentonhimself—particularlyunfortunateinregardstohisresearchintosyphilisandgonorrhea—theofficial

surgeonofEngland’sKingGeorgeIIIwasalsowasknowntoinstillwithinhispatientsanequalzealforself-experimentation.

Whenayoungmarriedman,desperatetohaveachildwithhiswife,cametohimin1790withagrimconditionknownashypospadias,inwhichtheurethrabasicallytakesawrongturnouttheundersideofthepenis,Hunterdevelopedaplan.Heequippedhispatientwithacollectionoflargesyringesandaprescriptionforfrequentmasturbation.Hewastocollecthissemenandinjectitintohiswife’svagina.Tragically,theexactdetailsoftheirbedroomanticsarelostforever,butthefellowdidreportedlyfollowdoctor’sordersoverthecourseoftwoyears.Bymostaccounts,asinglepregnancyresulted,andDr.Hunterhadproventhepossibilityofartificialinseminationinhumans.Butitwouldbeawhileyetbeforeanyphysicianwouldformallytakeupthecauseofassistedreproduction.

1866

ThepracticespreadtotheUnitedStatesin1866whenDr.J.MarionSimsofNorthCarolinaconductedaseriesoffifty-fiveinseminationswithvaryingdegreesofsuccess.

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1884

TheearliestrecordedAIinamedicalinstitutiontookplaceattheJeffersonMedicalCollegeinPhiladelphiabyDr.WilliamPancoast.Itwassosecretthateventhewomanbeinginseminatedwasn’ttoldthatthespermwasfromadonor,notherhusband.Afascinatingstoryworthtellinghere:

In1884,Dr.WilliamPancoastoftheJeffersonMedicalCollegeinPhiladelphiawentrogueanddecidedtohavealittlescientificfunwithoneofhispatients,aQuakerwomanwhohadlongbeenunabletoconceive.Aftermanyexaminations,hedecidedthatthefaultinfactlaywithherhusband’slowspermcount.Theman,anelderlymerchantmanyyearsolderthanhiswife,wasofficiallyshootingblanks.

Ratherthaninformherandherhusbandofthesadstateofaffairsandmoveonfromapointoffulldisclosure,Dr.Pancoastsummonedthewifetoonefinal“examination.”AsthewomanlayunconsciousandchloroformedonhistableassixofDr.Pancoast’sstudentslookedon,thegooddoctorinjectedintohercervixalargesyringefullofsemen-freshlydonatedbythestudentdemocraticallydeemedbythegrouptobethemosthandsome.

Thisunnamedwomandeliveredahealthybabyboyninemonthslater.Presumably,allwereecstatic.TheonlyproblemwasthatDr.Pancoastneveractuallyinformedheraboutwhathedidtoheronthetablethatfatefulday.Whetheritwastosparehertheembarrassmentofherhusband’ssterility,orwhetheritwassimplytoseeifhecoulddoitatall,Dr.

Pancoast’sexperimentremainedasecretsuccessfor25years.

ItwasonlyafterDr.Pancoastdied—aquarter-centuryafterthesuccessfulinseminationofhispresumablypleasedpatient—thatthetruthbecameknown.In1909,oneofthestudentspresentthatday,thesuggestivelynamedandincrediblyhandsomeDr.AddisonDavisHard,fessedupandpublishedaletterinthejournalMedicalWorldcontainingallthedirtydetails.ItisinterestingtonotethatDr.Pancoastdidactuallyinformthewoman’shusbandofwhathehaddone,andthattheyhaddecidedtogethertospareherthetruth.Inaddition,beforetheletterwaspublished,Dr.Hardtookituponhimselftotelltheby-thenall-grown-upbabyboyaswell.Hopefully,hismotherwasnotasubscriberofMedicalWorldinheroldage.

1890-1910

AIgainedacceptanceandpopularityinEuropeandRussia.In1897Dr.Heape,anoutstandingreproductivebiologistfromCambridge,reportedtheuseofAIinrabbits,dogsandhorses.Andin1899thefirstattemptstodeveloppracticalmethodsforartificialinseminationweredescribedbyIlyaIvanovichIvanoff(Russia,1870-1932).AlthoughIvanoffstudiedartificialinseminationindomesticfarmanimals,dogs,rabbitsandpoultry,hewasthefirsttodevelopmethodsasweknowtodayinhumanmedicine.

1894-1909

1n1909,Dr.Hamiltonclaimstohaveusedartificialinseminationforfifteenyears,“withoutasinglefailure”.

1924-1928

In1924,Rohlederinasurvey;oftheworld’sliteraturewasabletofindonly123casesreported,whilstin1928Engleman,inafurthersurveywasonlyabletoincreasethisfigureto185,ofwhichsixty-fivehadbeensuccessful.

1937

Hiihner,writingin1937claimstohavebegunextensiveuseofthepracticein1915.

1941

IntheUnitedStatesalone,AIresultedintenthousandsuccessfulpregnancies.InEngland,thefirstpublicationofamodernaccountofwhatwasthencalled‘DonorInsemination’(DI)wasproducedintheBritishMedicalJournal.Thedoctorbehindthe

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research,MaryBarton,wasvilifiedinthepressandcondemnedworldwide.Dr.MaryBartonstatedthatoveraperiodoffiveyearsabout300childrenhadbeenconceivedasaresultofartificialinsemination.

1941

In1941itwasreportedthat9,489womenhadbeensuccessfullyimpregnated,andthat97percentofthepregnancieshadterminatedsuccessfully.Thesefigureswerecompiledfromaquestionnairesentto30,000doctors,ofwhom7,643replied,andofthese4,049reportedthattheyhadcarriedoutsuccessfulimpregnations.

1940s and 1950s

AIwascarriedoutdiscreetlybyprivatemedicalpractitioners.Itwasdecidedthatitwasbesttoleaveunregulated(andremainssotoday).Parentsweretoldtonevertellanyone,noteventhechild.(Thispracticeofsecrecycontinuesonfordecades,andisstillrecommendedbysome“experts”,eventoday.)

1951

FurtherevidenceastotheextentofthepracticeintheUnitedStatesisthestatementmadebyPloscowetotheeffectthatbyI95Ithenumberofchildrenbornasaresultofartificialinseminationhadrisento20,000.

1953

Asaresultofthisresearch,thefirstsuccessfulhumanpregnancywithfrozenspermatozoawasreportedin1953.

1955

ANYPostarticlein1955estimatedthenumberofchildrenconceivedviaAItobe50,000,andgrowingby6,000peryear.

1963

Atthepresenttimeresponsibleestimatesindicatetherateofonethousandtotwelvehundredbirthsperyear,althoughhigherestimatesareoffered.

MoreRecentHistory:

1970s

Thespermbankingbusinessbecomespopularandcommercialized.

1979

Of711physicianslikelytoperformartificialinseminationbydonorsurveyedtodeterminetheir

currentpractices,471responded,ofwhom379reportedthattheyperformedthisprocedure.Theyaccountedforapproximately3576birthsbythismeansin1977.Inadditiontotreatinginfertility,26percentofthesephysiciansusedtheproceduretopreventtransmissionofageneticdisease,and10percentusedifforsinglewomen.Donorsofsemenwereprimarilyfromuniversities,wereonlysuperficiallyscreenedforgeneticdiseases,andwerethenmatchedphenotypicallytotherecipient’shusband.Mostrecipientswereinseminatedtwicepercycle.Only17percentofphysiciansusedthesamedonorforagivenrecipient,and32percentusedmultipledonorswithinasinglecycle.Only37percentkeptrecordsonchildren,andonly30percentondonors.Theidentityofdonorsusuallywascarefullyguardedtoensureprivacyandtoavoidlegalcomplications.

1987

TheOfficeofTechnologyAssessmentmadevisitsto3spermbanksand10invitrofertilizationclinics.

Atotalof1,558questionnaireswerecompletedandreturnedbythesampledphysicians(aresponserateof61percent),whichincluded37physiciansinthecross-sectionalsampleand385fertilitysocietyphysiciansregularlydoingartificialinsemination,i.e.,seeingfourormoreinseminationpatientsperyear.Anamendedsurveyformwasalsosentto30U.S.commercialspermbanksidentifiedbytheAmericanAssociationofTissueBanks(MTB)andtheAmericanFertilitySociety(AFS),and15ofthoseformswerereturned.Thesurveyestimatesthat172,000womenunderwentartificialinseminationin1986-87,atanaveragecostof$953,resultingin35,000birthsfromartificialinseminationbyhusband(AIH),and30,000birthsfromartificialinseminationbydonor(AID).

Theseincompletenumbersfrom1986-1987arestillusedtodaybythemediaandbyindustryexperts.Thishasledmanytothefalseconclusionthatthereissomeentityrequiringrecordkeepingonthechildrenbornfromeggandspermdonations.WhileSARTinsiststhattheyhaveaccuratenumbersonthenumberofeggdonorbirths,researchfindsthatmorethan40%ofparentswereneveraskedtoreportthebirthoftheirchild.

Theoften-citedfigureof30,000birthsperyearisbasedonanextrapolationfromaverysmallnumberofvoluntarysurveyresponses.Thesefiguresarefurtherconfoundedbyasharpdeclineofpractitioners

32

atthattime,dueinparttoincreasedquarantinerequirements(includingrestrictionsagainstfreshsemen)resultingfromthecirca1984discoverythatsemencouldtransmittheHIVvirus.

PriortotheAIDScrisis,donorinseminationwaslikelymuchmoreprevalentinsmallclinicsanddoctor’sofficesintheabsenceoffreshsemenrestrictions.IntheyearsfollowingtheOTAreport,theprevalenceoflargespermbanksandincreasingacceptanceandpopularityofthetechnologysuggestsfigureshavelikelygrownconsiderably.Asaresult,theOTAfiguresmostcertainlyunder-representreality.

OtherKeyDates:

1953:Firstsuccessfulpregnancyusingfrozensperm.

1977:Firstsuccessfulinvitrofertilization(IVF)pregnancyachieved(althoughnobirthresulted.

1978:FirstbabybornfromIVF(LouiseBrown,inEngland).

1981:FirstIVFbabybornintheUnitedStates(ElizabethJordanCarr).

1983:FirstsuccessfuleggdonationatUCLA.

1984:Firstbabybornfromafrozenembryo(ZoeLeyland,inAustralia).

1990:Firstchildbornfollowingpre-implantationgeneticdiagnosis(PGD).

1992:Firstsuccessfulpregnancyusingintra-cytoplasmicsperminjection(ICSI).

1996:A63-year-oldwomaninCaliforniagivesbirthusingadonatedegg.

1997:Firstsuccessfulbirthusingfrozeneggs.

1999:NatalieBrown,youngersisterofLouiseBrown,becomesthefirstIVFbabytonaturallygivebirthtoachild.

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The Donor Sibling Registry Reaches 50,000 Members!

TheForcewithus!May4,2016!

34

Sperm Donation Needs Federal Regulation

Accesstocriticalinformation--andhonestyofdonors--mustbearule

RecentreportsofparentssuingalargeU.S.spermbank,Xytex,becausetheirdonorwasfoundtohaveacaseofunreportedschizophreniaaswellasanunreportedcriminalhistorythatincludedjailtimehaveraisedalotofquestions:Dothesefamilieshavetherighttobeupsetwiththedonor?Shouldhehaveself-reportedhisupdatedmedicalinformationandcriminalrecordwiththespermbank?Shouldtheburdenbeplacedonthespermbank?

Thiscasehighlightsthelackofregulationandoversightinthesperm-donorindustry.Theseparentsonlylearnedofthedonor'spastbyconnectingwithotherfamiliesontheDonorSiblingRegistry,ofwhichIamthedirector,andonXytex'sownwebsite.Howlongwillwecontinuetoseetherepercussionsofanindustrythatexhibitsalackofaccountability,ethicsandresponsibilitythatwewouldnormallyexpectinanyothermedicalarena?

Alltoofrequently,theDonorSiblingRegistrycounselschildrenofspermdonorswhoinheritundisclosedgeneticdisorders,discoverthattheirdonorwasdishonestabouthismedicalhistory,orfindthatthespermbankdidn'tnotifythemaboutreportedillnessoramendtheirdonor'smedicalprofile.Thesetypesofsituationshavebeenreportedfordecades.

Thenumberandseverityoftheseincidencesisdiscomfiting.Familiesclearlyneedtobewarnedaboutpossiblehereditarydisorders.

Sincedonorscanfathermanyoffspring,donorscanpotentiallytransmitdiseasetoscoresofchildren.

Currently,manyspermbankseitherrefusetoupdatedonor/offspringmedicalinformation,or,eveniftheyacceptupdates,areunabletosharetheinformation,asmanydonothaveanaccurateaccountingofallchildrenbornfromanyonedonor.Sometimestheycanmaketheprocessofreportingsocomplexorexpensivethatdonorsandrecipientssimplycannotaffordtocomply.

AccordingtoDonorSiblingRegistryresearch,84%ofitsspermdonorssurveyedwerenevercontactedformedicalupdates,andalmostaquarterofthemsaidtheyorclosefamilymembershadhealthissuesthatwouldhavebeenimportantforfamiliestoknowabout.

Toooftenthemedicalprofileofaspermdonorismerelyasnapshotofonedayinthelifeofahealthyyoungman.Itoftendoesn'trevealwhatwillhappenfiveor10yearsdowntheroadtothedonorortomembersofhisimmediatefamily.

TheFoodandDrugAdministrationrequiresspermbankstotestforSTDsandasmallhandfulofotherdiseases.Mostspermbanksalsoobtainaself-reportedpersonalandfamilymedicalhistoryinordertoidentifyanyrecurringissuesthatmaybegeneticinorigin.Andsomeconductbasictestingtodetectspecificmutationsofspecificgenesandcheckforcarrierstatusofthemostcommongeneticconditions,suchascysticfibrosisandspinalmuscularatrophy.

Butwithoutfullgenomesequencing,itisimpossibletoknowaboutthethousandsofothergeneticconditionsthathavebeendiscoveredsofar.Andsincemanydiseases,likeschizophrenia,oftendonotaffectpeopleuntiltheyareadults,withoutaclearchannelfor

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communicatingandupdatingmedicalinformationamongfamiliesanddonors,wewillcontinuetohearaboutstorieslikethisone.

Thisisaninternationalissue.ThelargeU.S.andDanishspermbanksclaimtoshipspermtoclinicsinmorethan40and50countriesworldwide.Toprotectdonors,recipientsandoffspring,wemustimplementoversightandregulationbyanindependentauthority.

Itsfirstordersofbusinessshouldbetorequireaccuraterecordkeeping,limitsonthenumberofchildrenbornforanyonedonor,andcompulsorygeneticandpsychologicaltestingofalldonors.

ThiscommentarywaspublishedinTIMEMagazine4/25/16

http://time.com/4299641/sperm-donation-needs-federal-regulation/

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Egg Donation: Reporting Discrepancies & Medical Issues

Wecanseehugediscrepanciesregardingstatisticsthatthereproductivemedicineindustryreportsforthehealthofeggdonorsfollowingdonations.Thisinformationisregularlygiventodonorsbeforetheydonatetoreassurethemthattheprocessissafe.

ForexampleUCSFMedicalCenteroffersthisinformationtopotentialeggdonors:

Thereisasmallriskofovarianhyperstimulationsyndrome(OHSS)developingduringaneggdonationcycle.

Anotherwebsite,AngelEggDonationreports:

InfindingsreportedtotheASRM,OHSSisassociatedwithapproximately1%ofAssistedReproductioncycles.

However,ourresearchpaintsadifferentpicture.Inourfirstpublishedstudyof155eggdonors,wefoundthat30.3%reportedOvarianHyperStimulationSyndrome(OHSS).

Inoursecondsurveyof176eggdonorsin2014,wefoundthat32.4%ofeggdonorreportedcomplicationssuchasOHSSandinfection.

Well,hereisonepossibleexplanationforthediscrepancyintrackingcomplicationswitheggdonors.ThisisfromarecentemailIreceivedfromaformereggdonorontheDonorSiblingRegistry:

Iwokeupduringoneretrieval.WhatIrecallisthatthedoctorwasroughly,rapidly,andaggressivelyplucking

myeggs.Icouldseetheimageofmygrosslyinflatedovaryonthescreen.Iprotestedinsomeway-calledoutinpainorsaid“hey!”Hisreactionwasangry-Ifelthostilitydirectedatme;it'spossiblethatthenursewasactuallytheintendedrecipientofthisanger.Perhapsshehadn'tknockedmeoutsufficiently.

IsubsequentlyhadsymptomsofOHSS(“warnings”orinformationaboutthishadbeenextremelylightanddismissive).Mycallstotheclinicwentunanswered.Idrovedownthereinstead.Theyquicklygotmeoutofthewaitingroomfullofhopefulparents,lookedateachother,andtoldme,“well,gototheERthen.Idon'tknowwhatyouwantustodo.”KeepinmindthattheyknewaheadofthiscyclethatIwouldnolongerbedonating.Therewasneveranyfollowupfromtheclinic.

Interestingly,therecordsIrecentlyrequestedandreceived(afterinterventionfrommydoctor)don'tincludeanythingaboutthatcycleotherthanafewbloodtests,whereastherecordsforthepreviousdonationsincludedetailedsonogrammonitoringoftheprogressoftheeggs,informationaboutthemeds(namesanddosages),andthedateandtimeofthetrigger.

ACanadianjournalistdiscoversotherreasonsthatOHSSineggdonorsmaynotbereportedaccurately(relevanttoUSdonorsaswell):

TherearemanyreasonswhyCARTR(CanadianAssistedReproductiveTechnologiesRegistry,whichismaintainedprivatelybythemedicaldirectorsofinvitrofertilizationclinics)dataondonor-adverseeventsmaynotbecomplete.Foronething,it'snotcommonpracticeforfertilitydoctorstoformallyfollowupwithdonorsafteraprocedure,unlessthewomenarespecificallyatriskofOHSS.Severalphysicianstoldmethattheysimplyinvitedonorstogetintouchifthere'saproblem.Somewomendoso,butothersmayhavealreadylefttown,orthey'retoldbybrokersnottocontactdoctorsdirectly.Healthconcernscanalsoturnupweeks,monthsorevenyearsafterthedonation.Bythatpoint,it'snotclearifthey'rerelated,sosomedonorsdon'tmentiontheseissuestotheirfertility

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doctors.Withoutdeliberatefollow-up,doctorsmaynotbeawareofwhatgoeswrongafterthefact.

SeanTipton,theASRM'slobbyistrespondstothecallsforlongtermhealthstudiesoneggdonorsinaTIMEMagazinearticle:Thelong-termhealtheffectsofeggdonationhaveneveractuallybeenstudied,inlargepartbecausethehighcostofstudiesdoesn't“seemjustifiedintermsofwhatthepossiblerisks[oftheprocedure]mightbe,”accordingtoSeanTipton,spokesmanfortheAmericanSocietyforReproductiveMedicine(ASRM).

Additionally,wheneggdonorssuffermedical/geneticissuesafterdonatingthatrecipientfamiliesshouldknowabout,theyoftentimeshavetroublegettingthisurgentmedicalinformationthroughtheclinicsandontothefamiliesthatdeservetobeintheknow.

We'verecentlyheardfromseveralmoreformereggdonorswithmedical/geneticissuesthattheyfeltimportantforrecipientfamiliestoknowabout:

IdonatedmyeggsfourdifferenttimesatGenetics&IVFInstituteinFairfax,VAinthe90s/early00s.SincethenIdiscoveredIcarryagenewhichmeansI'matamuchhigherriskforgettingseveraltypesofcancer.SincethenI'vetriedtocontactGenetics&IVFInstitutesothattheycanrelaythisinformationtomyoffspring(theyhavea50/50chanceofinheritingit)buttheywerenotinterestedanditwasobviousthattheywerenotgoingtoinformthefamiliesdespitethefactearlyscreeningcouldpotentiallysavethesechildren'slives.

I'verecentlyturned42yearsoldandIwasjusttoldthisweekthatImostlikelyhaveOvariancancer(thiswillbeconfirmedthroughpathologyaftersurgery)andthatIwillneedmyovaryremovedasap.Idon'tknowifthisisbecauseofdonatingmyeggswhenIwasyoungerorbecauseofmyfamilyhistory.It'sveryupsettingeitherway.

Theydidn'tupdatemymedicalinformationwhenInotifiedthem.Ihavecontactwith1/5ofmyrecipients.Shewasmy3rddonation.Inotifiedthem

priortothatdonationofseveralissues.Shedidnotreceivethoseupdatesuntilwegaineddirectcontact,andIupdatedthemforher.Itmakesmesicktothinkthishappenstomorethanjustourcase,andwithconditionsworsethanwhatwasfoundinourfamily.

InotifiedGIVFin2005(7yrsafterdonation)thatIhadbeendiagnosedwithageneticcondition.Someonetherepromisedthattheywouldpassalongtheinformationtoanyrecipients.Lastyear,throughDSR,arecipientandImadecontact.No,theyhadnotbeennotified.Iimaginethishappensalot.

IfyouusedtheCooperCenterforIVFbetween1997-1999,orknowanyoneelsethatdid,pleaseseethepostingsforthisclinicontheDSR.ContactWendyifyouneedmoreinformation.Ihavebeenamemberoftheregistrysince2004.Idonatedeggsin97,98,and99.Iamconcernedaboutthechildrenthatmayhaveresultedfromthosecycles.IhavebeendiagnosedwithAutosomaldominantPolycystickidneydisease(ADPKD).Ihave4children,2havethedisease.Onedoesnotandtheyoungesthasnotyetbeentested.Heis15andconceivedfromthecyclein99.Ikept3eggsanddonated20.IcontactedtheclinicimmediatelyafterIfoundout.Theycompletelyacceptedtheinformationbutdidnotgivemeanyrealindicationthattheywouldrelaytheinformation.Ilostmymomin2005toaneurysmasaresultofthedisease.Myniecehadaneurysmsurgery4yearsago.Shewastheyoungestdiagnosedwithseriouscomplications.Mysistersarebothinrenalfailurewaitingfortransplants.

TheSocietyforReproductiveTechnology(SART)claimsthattheydohaveaccuraterecordsofbabiesbornthrougheggdonation.Inourresearch,wefoundthat42%ofparentsofeggdonorchildrenwereneveraskedtoreportthebirthoftheirchild.Sohowisitthenpossibletohaveaccuraterecords?AndwhydobothSARTandASRMcontinuetoblockallcallsforaccuraterecordkeeping?

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THINKING ABOUT SELLING YOUR SPERM OR EGGS?

Sellingyourspermoreggsmeansmuchmorethanpayingforaspringbreakvacation.

Thiskindofirresponsibleadvertising(fromaNYspermbank),onlygoestoshowthelackofpropereducationgiventoprospectivedonorsaboutdecisionsmadenowforaquickbuck,thatcanaffectthem(andtheirfamilies)fortherestoftheirlives.

Ifyouareconsideringsellingyourspermoreggs,areyouthinkingaboutyourmedicalhistory,past,presentandfuture?

Wouldyoubewillingtoprovideongoingcurrentmedicalinformationwithrespecttoyourselfandyourimmediatefamily?Asa“donor”,itisimportanttoconsidertheongoingramificationsforanychildrenconceivedwhoshareyourDNA.Ifyousellyourspermthisyear,thespermmaybesoldformanyyearsintothefutureandpotentialmothersmaykeepthatspermformanyyearsafterpurchase,attemptingtoprovidetheirchildrenwithfullbiologicalsiblings.SeveralfamiliesontheDonorSiblingRegistry(DSR)reportthattheyknowofhalfsiblingsmorethan20yearsapartinage.Eggdonorswhodonatetotheneweggbanksarenowfacingsimilarsituations.

Shouldyouoramemberofyourimmediatebiologicalfamilydevelopahealthormedicalissuefollowingyourinitialcompletionofthedonorinterview,itwouldbeessentialthatyouprovidethisinformationtothespermbankoreggclinic/agency/bankandposttheinformation(anonymouslyifyou'dlike)ontheDSRwebsite,http://www.donorsiblingregistry.com/,whichenablesdonors,recipients,andoffspringtomakemutualconsentcontact,tomeeteachother,andalsotoshareandupdatemedical/geneticinformation.

Publishedresearchhasrevealedthat97%ofeggdonorsand84%ofspermdonorshaveneverbeencontactedtoupdatetheirmedicalrecords,while31%ofeggdonorsand23%ofspermdonorsreportthatthey,orimmediatefamilymembersdidhavemedical/geneticissuesthatwouldbeimportanttosharewithfamilies.

It'snotjustyourlooks,intellectorathleticabilitiesthatmightgetpassedalong.Susceptibilitytodiseaseisalsoofteninherited.Formanyyearsafteryouroriginaldonation,childrenwhoshareyourDNAmaydevelopmedicalandhealthconcernsthatcanonlybeproperlyaddressedwithyourupdatedinformation.

Conversely,itmightbecrucialforyoutoknowaboutanymedicalissuesreportedbyfamilies,asyoumaysomedayhavechildrenofyourown.Itisalsoimportanttonotethattheaccuracyofthemedicalandhealthhistoryyouprovidetothespermbankoreggclinic/agency/bankiscrucialtothepotentialparentsreviewingthatinformation.Certainconditionscarrygeneticcomponentsthatarenotreadilytestedfor,andyouraccurateinformationisvitalforproperscreenings,testing,andpreventativecare.

Ifyouhavechildrenofyourown,orplanto....

Haveyouconsideredthepossibilitythatinthissmallworldyourchildrenmayencounterbiologicalhalf-siblings?

Atthepresenttime,spermbanksandclinicsdonotkeep,noraretheyrequiredtokeep,anyrecordoflivebirthsresultingfromanyspecificdonor.WhatthismeansforthechildrenbornwithyourDNAisthattheymaybemanyinnumbers.Currently,thelargestgroupofhalf-siblingsontheDSRisaround200.Thechildrenyouhavenow,ormayhaveinthefuture,may

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meetyourbiologicalchildrenbornfromyourdonations.Randommeetingsamonghalf-siblingsareregularlyreportedontheDSR.Honestyisessential.Beforeyoudonate,consideryourwillingnesstobeforthrightwithyourchildren.

Areyouplanningondonatinganonymously?

Ifyouareplanningonbeingan“anonymousdonor”itisimportanttounderstandthatbecauseofadvancesinDNAtestingandInternetsearchengines,thelikelihoodofyourremaining“anonymous”inthefutureisgrowingsmaller.Haveyouconsideredwhatyourreactionwillbeifyouare“found”byyourbiologicalchildreninthefuture?Thechildrenbornfromyourdonationsmaybecuriousandwillwanttosearchouttheirancestry,medicalbackgroundsandtheirgeneticroots.Asnotedabove,manydonorshavemorethan20,50andevenmorethan200biologicalchildren.

Haveyouconsideredthepossibilitythatyouwillbecontactedinthefuture,evenifyourdonationisanonymous?Howwouldyourespondif,onedayinthefuture,youwereaskedtomeetwithyourgeneticoffspringandhisorherparents?Youwillneedtothinkaboutthefactthatthiscouldbepotentiallydisruptivetoanyfamilythatyoumayhaveformedinthetraditionalmanner.

Withthisinmind,wouldyouconsiderregisteringontheDSRsothaturgentinformationcanbepassedbackandforthrightfromthestart??

Pleaseconsider...

Pleaseconsiderhowyoumightfeelaboutyourdonationinthefuture.Itislikelythatmorethanonechildwillcometoexistasaresultofyourdonations.Thesechildrenaregeneticallyyours;infact,theymayonedayhavechildrenoftheirownwhowillbeyourgeneticgrandchildren!

Takeamomenttoimaginehowdonoroffspringmightfeel.Manywillwonderaboutwheretheygotsomeoftheirphysicalcharacteristics.Orwonderaboutwheretheygettheirtalentsandpersonalitytraitsfrom.Manyareextremelycuriousaboutgeneticfamilyhistoryandancestry.Andmanyfeeladeeplongingtoconnectwithandtoknowtheirunknowngeneticparent.

Imagineyourreactionifyourgeneticoffspringfoundyouandexpressedastrongdesiretoconnect,oriftheyneededalifesavingbonemarrowtransplant.Pleaseconsidertheseissuescarefullyasyoumakeyourdecisiononwhetherornottobecomeadonor.Youractionstodaymayhaveanincalculableeffectonthefuture.

Yourdonationismuchmorethanatransactionwithaspermbankoreggbank/clinic/agency.

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Donor Conceived People Searching – One Central Registry

DonorSiblingRegistry“Copycat”Sites–WhyDilutetheSearch?

Overthepastdecadeorso,therehavebeenafewDonorSiblingRegistry(DSR)“copycat”sites.(I'veaddressedthesecopycatsitesin2008and2013DSRblogposts).ThesesitessometimesclaimtoofferthesamecapabilitiesthattheDSRoffers.Theycomeandtheygo,andeventually,theyallfizzleout.Recently,Ihaveseensomenewonescroppingup.

SomehavestolenDSRwebsitecontentsuchasourfacilitylist,andthemostrecentonehasliftedourUserPolicy(andotherverbiagefromaroundtheDSRwebsite).Weworkedforyearstobuildourfacilitylist,whichincludeshundredsoffacilities,andhavespentmanyhoursoverthepastdozenyearsfinetuningourUserPolicy.Stealingourcopyrightedcontentisanindicatorthatthesenewgroups,inadditiontoclaimingtoreplicateourmission,andourSuccessStories,justdon'thavethevision,ortheabilitytoputinthenecessaryworktomakeaunique,innovativeorganizationoftheirown.

Thesenew“registries”simplydilutewhathasbeenasinglefocusedsearchingcapability.I'veheardfrommanyadoptedpeople,thattheywishtheyhada“DSR”typeofdatabase,onecentralplacetosearch.In

thesamevein,peoplesearchingforgeneticfamilyatthecommercialDNAsiteshavebeenfrustrated,asthereare3or4largeDNAcompaniesthatdon'tsharedatabases.Themoredonor“registries”thelesslikelypeoplearetofindoneanother.

BillCordray,fordecadesoneofthemostoutspokendonorconceivedpeopleintheUS,weighsin:

IthinkitisabadideatounderminethereputationofWendy'sworkbysettingupacompetitiveregistry.Althoughit'safreeInternetandyoucandowhatyouwant,itwilljustweakenthevalueofDSRifseveralsimilarregistriesaresetupandyou'dhavetogotoallofthemtodoanycross-checking.Asfarasthefeegoes,itismorethanreasonable.

Thesenewsitesboastthattheyarefree.Well,it'seasytobefreewhileyouhaveafewdozenmembers,orevenafewhundred.Wewerealsofreeforthefirstfiveyearsofoperation(2000-2005),asIranandbuiltthesitewithmyownmoneyandafewsmalldonations.Whenwehitmorethan7,000members,itbecameclearthatIwouldneedhelpfrommemberstocontinueexpandingourcharityorganization,aswereceivednooutsidefunding,andhaveanextremelycomplicatedsetofdatabases.Itwasonlythenthatwe

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turnedtoourmembersformembershipfeeassistancetohelpuskeeptheDSRup,runningandgrowing.

TheDSRwebsiteisstillcompletelyfreeforbrowsing,andthe$75/yearor$175/permanentmembershipfeesareonlyforpeoplewantingtoposttheirinformationormakecontact.Withalmost49,000totalmembers(donorconceivedchildrenandadults,parents,eggandspermdonors,and“others”),andalmost13,000peoplematched-youroddsareprettygoodformatchingontheDSR.Ifyouweresearchingforfirstdegreegeneticrelatives,youroddsaremuchbetteratawebsitewith49,000membersthanonewithafewhundred.

Thisnew“themorethemerrier”fallacyismisleading,andultimatelywillresultinkeepingdonorrelativesfromfindingeachotherwiththespeedandeasethatmanyothershaveexperiencedbeforethem.Creatingmore“registries”isonlyadisservicetodonorfamiliesaroundtheworld.IfthefocusistakenoffoftheDSR,itmakesitharderforpeopletoknowwheretopostthemselvessothattheyhavethebestchancesforbeingfound.

Thecopycatsitesservetodilutethesearch,asifyoupostonacopycatsite,youmayneverknowthatyourmatcheshavebeensittingontheDSRallalong.AfterournationalmediastoryonCBSafewweeksago,andasubsequentarticleinTeenVogue,familieswerereportingtomethatthenewestcopycatsitewastakingcreditformatchesalreadymadeontheDSR,

(spermbankshavedonethistoo),andspeakingoutpubliclyagainstmeandDSR.

So....copycats,ifyouwanttotrulymakeadifference,don'treplicatewhat'salreadybeendoneanddon'tbadmouthour15yearsofsuccessfullyconnecting,educatingandsupportingdonorfamilies,thepublic,andthereproductivemedicineindustry.Thinkforyourselvesaboutnewwaystoencourageandaffectamoreethicalandresponsiblereproductiveindustry.

MishaAngrist,PhD,MFA.(SeniorFellow,DukeInitiativeforScience&Society,AssociateProfessorofthePractice,SocialScienceResearchInstituteandVisitingAssociateProfessorofthePractice,SanfordSchoolofPublicPolicy,whohasinvitedtheDSRintohisMasterclasstohelpeducatestudents,hadthistosay:

IamhappyfortheretobeasingleDSR--anonprofitwithunimpeachablemotives.ForyearsWendyKramerhasworkedtirelesslytohelpdonor-conceivedpeoplefindeachotherandtheirbiologicalfamilymembers.ShehasspentmuchofherownmoneyandnowreliesonmembershipfeestokeeptheDSRafloat.Shehasearnedtherespectofthousandsoffamiliesbyconnectingandsupportingthemandbystandinguptothespermbanks.Iworrythatcopycatsiteshavethepotentialtounderminehereffortsandleaddonorfamiliesdownthegardenpath.

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An Open Invitation to All Sperm Banks

I'dliketosetachallengetoallspermbanksintheUS.

Iinviteyoutofollowinthestepsofmanyeggclinicsandagencies,andofferyourdonorsandparentstheoptionofwritingtheDonorSiblingRegistryintoyourspermbankingagreements-establishinganonymous(ifdesired)contactontheDonorSiblingRegistry,rightfromthestart.

TheDonorSiblingRegistry(DSR),isanon-profitorganizationthatassistsindividualswhowereconceivedasaresultofsperm,eggorembryodonation,andareseekingtomakemutuallydesiredcontactwithotherswithwhomtheysharegeneticties.Wefacilitatecontactamongsthalfsiblings(andtheirparents),andalsoconnectdonorsandfamilieswhowishtobeintouch--oftentimeslongbeforethechildrenturn18.

Since2000,wehavehelpedtoconnectmorethan12,700peopleonthewebsite,andnowhaveatotalof48,400members,includingmorethan2,400donors.OneDSRspermdonorwasfeaturedthisweekontheCBSSundayMorningNewsshowmeetingseveralofhisdonoroffspring.

Anotherdonordescribeshisheartfeltreasoningfordesiringcontact:

“Mydecisiontobeadonorwasinspiredbytheblessedgiftofmychildren.Theyandtheirhalf-siblings(Ionlyknowofasonanddaughter)havetherighttoknoweachother.Withhumility,IcansaythatI'veneverhadmisgivingsaboutbeingadonorandcontinuetodesirecontactwithoutanypresumptions.Isentaninquiryandpersonalletterto[myspermbank],and,havingsincediscoveredtheDSR,willtrusttheuniverseinthisquest.Asaparentofchildrenwhoarethelightofmylife,Ialreadyfeelanaffinitywiththeparentsofthesechildrenconceivedintrustandlove.”

We'rereachingouttopeoplewhofacilitatethecreationofhappyfamilies.We'dliketopartnerwithyou.Here'swhy:

• Aswemovetowardincreasedopennessasasociety,there'saparticularlystrongneedtostayattheforefrontofthetrendwithinthedonorindustry.

• 2012publishedresearch(ReproductiveBioMedicineOnline)on164spermdonorsshowedthat,while84%ofspermdonorshaveneverbeencontactedbytheirspermbanksformedicalupdates,23%ofthedonorsfeltthey,orclosefamilymembers,hadmedical/geneticissuesthatwouldbeimportanttosharewithfamilies.94%wereopentocontactwithoffspring.

• RegisteringontheDSRistheonlywayforparentsanddonorstostayanonymous(ifdesired)whilestillestablishingrelationshipsandsharingmedicalinfo.

• Itcanbeofequalmedicalimportancetodonorsthattheiroffspringprovideupdatedmedicalinformation,especiallyasthedonorsbuildtheirownfamilies.

• Wenowknowthatthereisdesireforearliercontactbetweendonorsandrecipientfamilies.Manyappreciatetheabilitytoestablishcontactandfosterrelationshipsasachildisgrowingup.Manythinkthat18isanarbitraryagethatdoesnotmeettheneedsofdonoroffspring.

• Familiesoftenwishtheycouldasktheirdonorssimplequestions,suchas,“Mysonwouldliketoknowifyoueverplayedamusicalinstrument?”or,“Isthereanydiabetesinyourfamily?”or,“My10yearolddaughterwouldliketosendyouafather'sdaymessage,isthatok?”

• TheDSRcanhelpbyprovidingavaluableservicetoyourparentsanddonors,andtoyourcompany-atnocosttoyou.(It'sawin-win-win!)

In2015,anotherpublishedstudyofspermdonorsinFacts,Views&VisioninOB/GYN(theScientificJournaloftheFlemishSocietyofObstetrics,Gynaecology&ReproductiveHealth),called“SpermDonorsDescribetheExperienceofContactwiththeirDonor-ConceivedOffspring”revealedthatmostofthesurveyeddonorshadbecomecuriousabout,andhadmadecontactwith,theiroffspring.Almosthalfoftherespondents

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nowconsideringtheirdonor-conceivedoffspringtobe“likeafamilymember”.Atthesametime,donorswererespectfuloftheintegrityofthefamilyinwhichtheiroffspringwereraised.

WhatDoesARelationshipWithTheDSRDoForYourSpermBank?

• CONTACT:Theissueofcontactbetweenthedonorandtherecipientisremovedfromthehandsandfocusofthespermbank.

• CONSENT:SincetheDSRreliesonmutualconsent;thespermbankdoesn'tneedtobeworriedaboutprotectinganyone'sprivacy.

• CHOICE:Eachpartycanremainanonymousiftheychoose,sothedecisionisultimatelyinthehandsofthoseinvolved.Eachpartycandecidehowmuchinformationthey'recomfortablesharing.

• CURRENT:ThesharingandupdatingofmedicalrecordshappensontheDSR,sotheagency/clinichaslessworksincetheyhaveprovidedatoolformedicalupdates.

• EMPOWER:Parentsanddonorsareempoweredtosettheparametersoftheirownrelationships,withoutamiddleman,andwithoutwaiting18years.Offspringhavetheopportunitytoestablishrelationshipswiththeirgeneticfatherswhiletheyaredeveloping,nothavingtowaituntiltheyareadults.

Weinviteyoutosetprecedentwithinthespermbankingindustry.Becomealeaderinfullyeducatingandsupportingfamiliesanddonors.Ifweask,“whatisinthebestinterestsofthechildbeingborn?”theanswerisnever“touseanonymousdonors”.Anonymityisantiquated.Itisaconceptofthepastintheadoptioncommunity,andbecomingsoinspermandeggdonationaswell.

Thedesiretoconnectisherenow,andwecanmovethespermbankingindustryforwardinanopenandsupportiveway,acknowledgingtherightsandneedsofdonorconceivedpeopletoknowabouttheirbiologicalparents,therightsofdonorstoknowaboutchildrenthattheyhelptocreate,andtherightsofparentstobetterservetheneedsoftheirdonorconceivedchildren.

Welookforwardtoworkingwithyou!WehavesamplecontractverbiageandfrequentlyaskedquestionsontheDSRwebsitetohelpyouincorporatetheDSRintoyourdonorandparentagreements.

Somefeedbackfromtheeggdonationindustry:

“MoreandmoreofourrecipientanddonorpairshopetosignupfortheDonorSiblingRegistry.Weoftenhavecommentsabouthowhelpfulyouareasfacilitator.”-Andi,OregonReproductiveMedicine

“EachyearIseemoreintendedparentswhowanttomakesuretheirchildoneday''hastheoption''tomeettheirdonoriftheywish.AsanagencyIamgratefulthatthereisaprogramlikeTheDonorSiblingRegistrythatcanbeanadvocateforthechild,donor,andintendedparentswhodesirethistypeofrelationship.”KatyEncalade,ProgramDirector,EggDonorSolutions

“Justwantedtosendanotetosayhowmuchourclinicappreciatesthisoptionforourpatients.Currentlyourofficeonlyoffersanonymousembryodonation.However,someofourpatientswouldlikeamoreopenarrangement.Yoursiteallowspatientswhotrustourofficeandwanttostaywithus,tohavethebestofbothworlds.Nowtheyhaveaplacewheretheycangotocontroltheamountofcontacttheyhavewiththeirdonororrecipient.It'stheperfectsolutionforthemandwearegratefulyouofferthisoption!”-ChristineTheFertilityCenter,MI

WhileexploringtheideaofEggDonationtobuildafamilythereareunknownscenariosthatfamiliesmayencounter.Itissimpleforbothintendedparentsandeggdonorstoconsidertheirfeelingsandneedsnowbutmaynotfullyunderstandwhatfuturequestionstheremightbe.

TheDonorSiblingRegistryallowsasafeandcomfortablewaytoallowfuturecommunicationwhenitbecomesapparentitwouldbebeneficialtoaparent,theeggdonor,oraresultingchild.TheRegistryallowsallpartiestoaskquestions,exchangemedicalinformation,andpossiblymeetwhenthetimeisrightforeach.TheDonorSiblingRegistryallowsallindividualstomoveattheirpaceandthelifetimemembershipisaworthwhileinvestment.-KallieWilson,MSW,CareCoordinator,EggDonorSolutions

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DNA = Donors Not Anonymous

Ican'thelpbutwonderwhenthespermbanksandeggclinicswillstartacknowledgingthatthereisnosuchthingasguaranteeddonoranonymity.IaddressedthisissueinmyrecentHuffingtonPostBlog,andithasbeenwrittenaboutmanytimesoverthepasttenyears,startingwithaNewScientistarticlefrom2005aboutaboylocatinghisdonoraftersubmittinghisDNAtoacommercialDNAwebsite.

Aquickreviewofsomeofthelargestspermbanksandeggclinicsfindsthatnotoneofthemmentionintheirdonorrecruitmentmaterialstheeasewithwhich,andthegrowingfrequencyofdonor-conceivedpeopleidentifyingtheirdonorsviaDNAtesting.Thisisnowaregularoccurrence.

Manyeggclinicsnotonlyofferanonymousdonors,butactuallyrequireanonymityforallinvolved.BecauseeggdonorchildrenarenowgettingtotheagewheretheyarestartingtogettheirownDNAtested,promisedeggdonoranonymityisalsobeingshowntobeamyth.Newfamilyfindertypeprogramsmakeconnectingviay-DNA(surnameconnections)nolongertheonlywaytofindgeneticrelativeswithDNA.

TheDSRrecommendsDNAtestingforitsmembers,butalsomanypeoplecometotheDSRbecausetheyonlyjustfoundoutthroughDNAtestingthattheywereconceivedusingdonorspermoreggs.After

confrontingtheirparentsaboutthenews,theylearnaboutwhichclinicorfacilitytheirparentsused,andsignupontheDSRtoconnectwithhalfsiblingsand/ortheirbiologicalparent.

LastmonthIhadaeggdonormomcontactmesayingthather19yearoldsonhadtoldherthathe'drecentlysentinaswabtohavehisDNAtestedwith23andme,andwaswaitingfortheresults.Itwasclearthatthisboyhadsuspicionsabouthisbiologicalparentage.ShewassofrozenwithfearthatevenwiththeimpendingDNAresultsontheway,shecouldn'tmusterthecouragetotellhimthetruthabouttheuseofaneggdonor.

Iseenoeducationalmaterialsonthespermbankwebsites,forbothdonorsandpotentialparents)addressingtheimportanceofdonor-conceivedchildrenknowingabouttheirgenetic,ancestralandmedicalhistories.NotonewebsitepointedtotheDonorSiblingRegistryasaplacetomakemutualconsentcontact(unlikemanyeggclinicsthatnowwritetheDSRintoinitialdonor-recipientcontractssocontactisestablishedrightfromtheget-go).

Bothspermandeggdonorsshouldknowthattheycanshareandupdatemedicalinformation,photos,andmessageswithfamiliesontheDSRatanytime.Thiscanbedonewithoutsharingidentifyinginformation,soifdonorsarenotreadytoestablishrelationships,

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theystillhaveavehiclewithwhichtoshareinformation.Anditgoesbothways,asmedicalinformationaboutthechildrentheyhavehelpedtocreatecouldbebeneficialtothemtoo,iftheyhave,orareplanningtohavechildrenintheirownfamily.

Thiseggclinicnotonlypromisesanonymityontheirwebsite,butalsoexplainswhyanonymityisusedbymostoftheirfamilies.Notonlyistherealackofeducation,theyaremisleadingparentstothinkthatchoosinganonymouseggdonorwillkeepanunwantedpartyfromintrudingontheirlives.Thismisleadingandincompleteinformationisgiventoparentsastheymakedecisionsthatwillaffecttheirchildfordecadestocome.

Ananonymousdonorisnotknownbyyou,therecipient.Withanonymouseggdonation,theeggdonor'strueidentity(nameandaddress)iskeptconfidentialinordertoensureprivacyandanonymity.Similarly,youridentitywillnotbedisclosedtothedonor.

Themajorityofeggdonationsareanonymousdonations.Manyintendedparentsfeelbetterknowingthattheireggdonorwillnotbeinvolvedduringpregnancy,andastheyraisetheirchild.

OneofthelargestUSspermbankshasthisontheirFAQpagefordonors:

Istheprogramconfidential?

Youranonymityisveryimportanttous.Alldonorinformationiscompletelyconfidential.Onlineapplicationsaresubmitteddirectlytoyourlocalfacility,andwedonotshareyourinformationwithoutsideparties.Donorfilesarenumericallycodedtoassureconfidentiality.Accesstofilesisrestricted.Youridentitywillnotberevealedtoanyrecipient,norshalltheidentityofanyrecipientbedisclosedtoyou.

Anotherspermbank'swebsitesays:

DonorConfidentiality

[SpermBank]takesgreatcaretoprotectyourprivacy.Ourdonorandpatientagreementsclearlyprotectandreleasedonorsfromanyobligationsandrightstoanychildthatresultsfromthedonor'sparticipationinourdonorprogram.NoidentifyinginformationisreleasedtopatientsoroffspringwithoutyourexpressconsentandparticipationintheIdentityDisclosureprogram.

Andfinally,fromthespermbankclaimingtobethe“largestinternationalspermbank”:

TheidentityofAnonymousspermdonorsalwaysremainsconfidential*

.....heterosexualcouplesseemtopreferAnonymousspermdonorsinordertoprotecttheman'sintegrityasthefatherandthustheirownfamilyidentity..

SpermbanksandeggclinicsneedtobothaddresstheissueofDNAtesting,andhowthisaffectstheperceivedandpromisedanonymityofspermdonors.Parentsanddonorsneedtobeadequatelyeducatedandgivenaccurateinformation.Andofcourse,ultimately,allanonymousprogramsneedtobeabolished.

Additionally,Ididn'tseeanyinformationincludedonthespermbankandeggclinicwebsitesfordonoroffspring.Incrediblethattheyhaveabsolutelynoacknowledgementorsupportfortheverypeopletheyarehelpingtocreate.

*Fulldisclosure:AsIwastryingtoexplain(inperson)howmysonlocatedhisdonorviaDNAtesting,thisparticularspermbank'sdirectorrespondedbytellingmethatnoneofhisdonorswouldeverswabtheircheeksforDNAtestingandthereforewouldneverbefound.Hecouldnotunderstand(andthereforecannotproperlyeducatehisdonors)aboutthefactthatadonordoesnothavetosubmithisownDNAinordertobefound.HealsotoldmethatbecauseoftheDSR,hisclinicwasnowoffering“invisible”donors.

IllustrationsbyJenMoore

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NBC Story: 48 Donor Siblings and the ASRM

HowOneGirl'sSearchBroughtHer48HalfBrothersandSisters

InNBC's11/6/15storyaboutdonorsiblingsthatconnectedontheDonorSiblingRegistry,weagainhearfromthespokespeopleattheAmericanSocietyofReproductiveMedicine(ASRM),andhowutterlydisconnectedtheyarefromtherealitiesofdonorfamilyissues.Maybethat'sbecausetheASRMismadeupoftheverypeoplethattheyaresupposedlymakingrecommendationsfor.Soit'sacaseofthefoxwatchingthehenhouse.Withoutanyoutsideregulationoroversight,it'sacaseof“self-regulation”byamulti-billiondollarindustry.(Whereelsehaveweseentherepercussionsfromasetuplikethat?!)

JudithDaar,thechairofASRM'sethicscommitteeandaprofessoroflawatWhittierLawSchool,questionswhetheritwouldbeappropriatetoputlimitsonspermdonors.

ButtheASRM'sSeanTiptondoesn'tforeseethefederalgovernmentestablishingaspermdonorregistry.

“Theydon'twanttospendthemoney,theydon'twantthehassle,”saysTipton.“Beforeyouaregoingtoregulatepeople'sreproductivechoices,youhavetohaveareallygoodreason.Idon'tthinkyouwanttojumpinonalegalsolutionwhereit'snotcertainwhatthelong-termconsequenceswouldbe.”“Couldasimilarregulationbeenforcedinanaturalsituation?Wouldwetellpeoplewhowantverylargefamiliestorestrictthenumberofoffspring?”saidDaar.“Ithinkwewouldnotfavorthelawlimitingtheindividual'sabilitytoprocreatenaturally.”

Right,Sean,butina“naturalsituation”thereisn'tthepossibilityofcreating200+childrenfromoneunknownperson.Andasfarashavinga“reallygoodreason”forlimitsandaccuraterecordkeeping,takealookattheDonorSiblingRegistryMedicalpage,you'llseealotof“goodreasons”whythisindustryneedssomesortofregulation,includingcomprehensivemedicalandgenetictesting,updatingandsharingofmedicalinformation,accuraterecordkeepingonthechildrenbornfromanyonedonor,andlimitsofthenumberofchildrenbornfromonedonor.Thelong-termconsequencesofestablishingamoreresponsible

industrywouldonlyhelpdonors,donorconceivedpeople,andtheirfamilies.

Insteadofpointingpeopletosituationsthatareunrelatedtous,thedonors,offspringandparentswhohaveuseddonorspermandeggs,whynotbebraveenoughtoaddresstheactualissue--thatthereisnooversightandregulationinahighprofitindustrythathasactedirresponsibilityandwithoutethics.Mr.Tiptonhasaddressedtheissueofregulationbysaying,“…weknowanyregulationofthatislikelytoimpedeaccessandincreasethecost.”Thisisnotaboutregulating“people'sreproductivechoices”,oramatterofmoney,asnooneischallengingaperson'srighttoreproduce.

Thisisadifferentconversation;abouttherightsofthechildrenthisindustryishelpingtocreate.Theyshouldbeabletoknowthattherearelimitsonamountofhalfsiblingstheycanhave,aswellashaveaccesstomedicalinformationandtotheirownfirst-degreegeneticrelatives.

Mr.Tiptontellsusthattheindustrydoesn'twantthe“hassle”ofcreatingaregistryforaccuraterecordkeeping.Ifeelthatregulationandoversightoftheinfertilityindustryisanecessity,andwouldonlyimprovethisbrokensystem,andhelpthousandsoffamilieswhohaveuseddonoreggsandspermtocreatetheirfamilies.

Apictureof200randompeople.ThispictureillustratesthelargestnumberofhalfsiblingsreportedtotheDSR.

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Biology and Birth Certificates: Our Right to Accuracy

MostU.S.citizensraisedbytheirbiologicalparentsneverquestionwhethertheinformationontheirbirthcertificatesisaccurate.Withtheevolutionofadoptionandalternatemeansofconceivingachild,“accurate”isanincreasinglysubjectiveterm.Isthepurposeofabirthcertificatetoportrayabiologicalaccountofaperson'sbirthparents,orisitanaccountofone's“legal”parents--theonesresponsibleforraisingthem?

TheU.S.BureauoftheCensuscreatedBirthCertificatesinthebeginningofthe20thCenturyasameansoftrackingtheeffectsofdiseaseandurbanenvironmentsonmortalityrates.ThetaskofissuingbirthcertificateswastransferredtotheBureauofVitalStatistics,adivisionoftheDepartmentofHealthandHumanServices,in1946whereitwasdecentralizedintoourfamiliarstatesystemsoftoday.

Asthedocumentevolvedoverthelastcentury,sohasitspurpose.Ithasbecomeanimportant(ifnotoursole)meansofidentificationwhenweobtainanythingfromadriver'slicensetoapassport.Ithasalsobecomeanindispensabletoolforgenealogicalresearchers.

Sohowdowedecidewhoshouldbelistedinthecategoriesof“Mother”and“Father”onabirthcertificate?

Fordonor-conceivedandadoptedpeople,thereisoftentimesacleardistinctionbetweenone'sgeneticparents,thosewithwhomyoushareDNA,andone'slegalparents,theoneswhohaverightsandresponsibilitiesattachedtotheirparenthood,andmost-times,theoneswhoareraisingthem.

However,ever-increasingnumbersofindividualsinbothsituationsareclamoringforreform,namelytheirrighttohaveabirthcertificatethatportraysaccuratebiologicalbackgroundaswellastheirlegalparentage.

Ourbirthcertificatepracticesconcerningnon-biologicalparentsbeganwithadoption.Inthemid-20thCentury,therewasrisingconcernthatadoptedchildren'sbirthcertificatesread“illegitimate.”Inresponse,statesbegantoissueadopteesamendedbirthcertificates,listingtheadoptiveparentsasiftheywerethegeneticparents,thushidingtheshameofthechild'sillegitimacyandtheadoptiveparents'infertility.Theoriginalscontainingthebiologicalparents'namesweresealedandnotavailabletoanyone(includingtheadoptee)exceptbycourtorder.Thenewbirthcertificatesshowednoindicationthattheyhadbeenamended,whichgaveadoptiveparentsaneasywaytonottelltheirchildrenoftheiradoption.

Despitethefactthat“legitimate/illegitimate”languagewasreplacedwiththemother'smaritalstatusin1979,thepracticeofamendingbirthcertificatestoreflectlegalparentagepersiststothisday.Inmoststates,adopteesoriginalbirthcertificatesremainsealed.

Nofederalbirthcertificaterevisionhasbeenissuedtoaddressdonorconceptionscenarios.Therefore,marriedcouplesinallstateswhousedonorspermareautomaticallygrantedtherighttolistthehusbandasthefatherandwomenwhousedonoreggstobecomepregnantarelistedasmothersonbirthcertificates.Noofficialasksthemiftheyusedanydonatedgametestoconceive,orforanyinformationaboutthedonorwhoisgeneticallyrelatedtothechild.Inaddition,insomestates,thebiologicalparentandthegayco-parentcanbothbelistedonthebirthcertificate.

Somanybelievethattheysharethesameancestryandmedicalbackgroundasbothparentslistedon

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theirbirthcertificate,wheninstead,theywereadoptedoraneggorspermdonorhasbeenused,andthechildsharestheirDNAwithanunknownperson(s).

Thereisawholehostofconcernsraisedbyadopteesandthedonor-conceived,includingtherighttoidentity,ongoingmedicalhistory,biologicalheritage,andtherighttoknowtheirgeneticparents.Howdowedealwithanadoptedordonor-conceivedperson'srighttoanaccuratebirthcertificate?Lookingahead,dowekeepthesamebirthcertificatestructure,orissomesortofadjustmentneeded?

Ourfederalgovernmenthasbeenagonizinglyslowtoaddresstheseissues,ifitacknowledgesthematall.Thereisalonghistoryofdeferringwhatitconsiders“familylaw”tothestates,includinghowparentageislistedonbirthcertificatesandwhetherornotadopteescanobtaintheiroriginalbirthcertificates.

Thishascausedmanytoattempttocircumventtheirstatesystembyhiringprivatedetectives,postingtheirinformationontheInternet,orusingcommercialDNAtestingcompanies.23andme,Ancestry.comandFamilyTreeDNAnowhavehundredsofthousandsofsubmissionsandarehelpingconnectthousandsoffamilytreebranchestooneanother.Inaddition,almost12,500donor-conceivedpeoplehaveconnectedwiththeirgeneticrelativesonDonorSiblingRegistry(DSR).Unfortunately,noneofthesemethodologiesguaranteethefindingone'sbiologicalparents.

Thebirthcertificateproblemexistsinothercountriesaswell.Asadopteesanddonorconceivedpeopleacrosstheworldfindtheirgeneticrelativesandparents,somehavetakenthetaskofproperdocumentationintotheirownhands.

Earlierthisyear,adonor-conceivedwomanintheUKsuccessfullyhadherbirthcertificateamendedtoremoveherlegalfather,andhavetheplacefor“father”blank,asshehasanunknownbiologicalfather(spermdonor).

Currently,amaninAustraliaispetitioningthecourtstodothesame,removinghis(nowdeceased)fatherfromhisbirthcertificate,saying,“I'mdoingthisbecauseIwantanaccurateandfactualrecordofmyconception,ofbirth.”Hegoesontosay,“It'snotjustformykidsbutalsomydescendantsinthatifanybodyinthefuturewastoconductgenealogyresearchonourfamily,Idon'twantthemtogodownthewrong

pathandiftheyhaveaninaccuratebirthrecord,theywillbasicallybelievealie.”

Adopteesareexpressingthesameconcernsaboutdescendantsbeingabletoconnectthedotswhenresearchingtheirancestry.Becausetwobirthcertificatesexistinadoption,there'snoguaranteethatthefactualonewouldbereleased&therefore“searchable”bydescendants.ThishasledmanyadopteesintheU.S.legallychangetheirnamestoreflectbiologicalrelationships.

Ignoranceofbiologicalancestryhashaddevastatingconsequencesforsome.IntheU.K.in2008,twinsthatwereseparatedandadoptedatbirthunknowinglymarriedeachother.Thisyear,aBraziliancouplefoundoutaftertheyweremarriedthatthesamebiologicalmotherhadabandonedthemasinfants.Randommeetingsamongsthalfsiblingsarenotuncommon,asmanyhavereportedinthenews,andontheDSR.Onemomrealizedthatadistantrelative,onewhomsheandherchildrenhadspenttimewithatfamilygatherings,haddonatedspermandwasinfactthebiologicalparentofherchildren.

Althoughcryobanksclaimtolimitthenumberofbirthstoonedonor,thisclearlyisn'tthecase.Wehaveseenasmanyas200halfsiblingsfromthesamedonorconnectontheDSR,andtherearemanymoregroupsof30,50,75andmore...andtheseareonlythosefamiliesthathaveregisteredonthewebsite.Clearly,thisposesapublichealthcrisis,inthecaseofsharedgeneticillness,oriftheoffspringareinaconcentratedgeographicareaand/ordonotknowtheyaredonor-conceived.

TheU.S.doesnotrequirecryobankstokeepaccuraterecordsonspermdonorfamilies,noraretheyforcedtolimitthenumbersofchildrenborntoanysingledonor.Ifadonorreportsaseriousillness,thereisnowayforthespermbankstonotifyallinvolvedfamilies.DiseasessuchasNF1,LynchSyndrome,CysticFibrosis,andHCM,asometimes-fatalgeneticheartcondition,haveallbeenreportedontheDSR,andhavebeenwrittenaboutinthemedia.HundredsofothermedicalconditionshavealsobeenreportedandsharedamongstDSRfamiliesandthesharingofthistypeofinformationhassavedlives.TheproblemisthattheDSRisavoluntarywebsite,andinmostcases,allfamilieswillnotbelistedandcontactable.

TheUSSurgeonGeneralreportsontheirwebsitethat,“Arecentsurveyfoundthat96%ofAmericansbelieve

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thatknowingtheirfamilyhistoryisimportant.”TohelpAmericansfocusontheimportanceofknowingfamilyhealthhistory,TheUSSurgeonGeneralalongwiththeDepartmentofHealthandHumanServicescreatedthe“FamilyHealthHistoryInitiative.”Thewebsitenotesthat,“Tracingtheillnessessufferedbyyourparents,grandparents,andotherbloodrelativescanhelpyourdoctorpredictthedisorderstowhichyoumaybeatriskandtakeactiontokeepyouandyourfamilyhealthy.”ItcertainlybegsthequestionwhytheDepartmentofHealthwould,byitsrefusaltoaddressthisbirthcertificatecrisis,preventmillionsofdonor-conceivedandadoptedpeoplefromhavingaccesstothisinformation.

TheUnitedNationsfelttheneedtoaddressidentityinArticles7and8initsConventionontheRightsoftheChild:

“Thechildshallberegisteredimmediatelyafterbirthandshallhavetherightfrombirthtoaname,therighttoacquireanationality...”(CRCArticle7)and“StatesPartiesundertaketorespecttherightofthechildtopreservehisorheridentity,includingnationality,nameandfamilyrelations...”(CRCArticle8).[3]TheU.S.hasyettoratifythistreaty.

DonorconceivedadultsintheInternationalDonorOffspringAlliancelisttheseastheir“SummaryofAims”:

Weassertthatpeoplehaveamoralrighttoknowthetruthabouttheirpersonalhistory.Wherethestatehascustodyofrelevantinformationithasadutynottocolludeindeceivingordeprivingindividualsofsuchinformation.

Adopteerightsorganizationshavebeenfightingfortherighttoidentity,includingtheunsealingoforiginalbirthcertificates,fordecades.AmericanAdoptionCongressstatesonitswebsite:

TheAmericanAdoptionCongressbelievesthatgrowth,responsibility,andrespectforselfandothersdevelopbestinlivesthatarerootedintruth.TheAACisthereforecommittedtoachievingchangesinattitudes,policies,andlegislationthatwillguaranteeaccesstoidentifyinginformationforalladopteesandtheirbirthandadoptivefamilies.

Itfollowsthat:

• Thetruthaboutanadoptedordonor-conceivedperson'sgeneticandsocialparentageshouldberecordedontheirrelevantpublicdocumentation.

• Inthenormalcourseofeventsoflifeitshouldbeimpossibleforapersontofailtofindoutthattheyareadoptedordonor-conceived.

• Theprincipallegalinstrumentalityofthisshouldbetheperson'sbirthcertificate.

Since1902,theU.S.hasmadetwelveStandardBirthCertificaterevisions.Legitimateconcernsraisedbytheadoptionanddonorcommunitiessuggestathirteenthfederalrevisionshouldbemadetoaccuratelyportraybiologicalidentityonbirthcertificatesandensurethatproceduresareuniformineverystate.

Mostintheadopteerightscommunityfeelthatissuingtwobirthcertificatestoadopteesisaleftoverrelicfromaneraofshameandsecrecyandshouldbeabolishedaltogether.Webelieveitisimportanttoissueonecertificateonlysoinformationcannotbehiddenfromtheindividualbyparentsorthegovernment.

Itisnoquestionthebestinterestsofthechildshouldbeparamount.Withthisinmind,forbothadopteeanddonorsituations,wewouldrecommendaU.S.StandardBirthCertificaterevisionexpandingthe“twoparentonly”formattoincludecategoriesforLegalParents,GeneticParents,andSurrogates.Inthecaseofadoptees,wewouldliketoseethechild'sbirthnamerecordedalongwithhisorherlegal/adoptivename.

Ifthebirthcertificateisamendedinanyway(suchasaddinglegalparentswhenanadoptionisfinalized)itshouldbeunlawfultoomitanyoriginalinformation,includingbiologicalrelations,fromthenewcopy.Wewouldalsoseektoabolishanonymousdonorconception,orattheveryleast,listtheclinicandthedonorIDonbirthcertificates.

Weunderstandandacknowledgethatthisrecommendedsystemisnotperfect.Whetherachildisadopted,donor-conceived,ornot,parentscanalwayslieonabirthcertificate.Asdonorconceptionismoreeasilyhiddenthananadoption,weadvocatetheestablishmentofanationalregistrywhereclinicsandhospitalswouldberequiredtorecorddonorsandtheirchildren.

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Thishasalreadytakenplaceinseveralcountries,mostrecentlyinSeptember2014inIreland,whichisintheprocessofabolishinganonymousgametedonationandcreatinganationalbirthregisterfordonorsandtheiroffspring.TheChildren'sRightsAlliancewasquotedintheIrishExaminersaying,“Weknowthepaincausedtothemanyadoptedpeoplewhocan'testablishtheidentityoftheirparents.Thisbillwillensurethatdonor-conceivedchildrenwillnotsharethesamepain.”

Therehasbeenmuchdebateinthedonorandadoptioncommunitiesonthe“true”purposeofabirthcertificate.Certainly,itsoriginalandenduringpurposeistokeepaccuraterecordsforthegoodof

publichealth.Fortheindividual,abirthcertificatehasbecomeanindispensableproofofidentityandancestry.ItshouldbeofutmostconcerntoourDepartmentofHealththatbirthcertificatesareservingneitherpurposefortheadoptedanddonor-conceived.

Thetimeforbirthcertificatereformisnow.Unfortunatelyformany,itshouldhavehappeneddecadesago.

CartoonbyJenMoore.Co-WrittenwithKristiLado,BoardMemberPennsylvaniaAdopteeRights(PAR),ContributortoAdoptionTherapy:PerspectivesfromClientsandCliniciansonProcessingandHealingPost-AdoptionIssuesbyLauraDennis.

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Donor Families Connecting: Love or Fear?

Ithinkthatmanyofthechoiceswe'refacedwithinlifeofferusopportunitiestochoosebetweenloveandfear.AfterrunningtheDonorSiblingRegistryfor15years,andfacilitatingtensofthousandsofhalfsiblingand/ordonorconnections,Iseethesechoicesveryclearly.We'vebeenabletowatchsomanyfirst-degreegeneticrelatives,whoareessentiallystrangerstoeachother,decidewhethertoconnect,andthenmaneuverthroughdefiningthisnewfoundfamily.

BrittanandherparentsalongwitheggdonorJoLanaandhertwodaughters,withKatieCouric

GettingtospendtimewithBrittanandherparentsJanetandJimbefore,andaftertheKatieshowwasinspiring.BecauseJimhasageneticconnectiontohisdaughter,IwasmorefocusedonJanet,Brittan'smom,asmanynon-geneticparentsindonorfamiliesseemtostrugglemuchmorewiththeideaoftheirchildrenconnectingwithdonorrelatives.WhenwewatchedJanet,wesawaconfidentandstrongparent.Didshehavefearsandhesitations?Yes,mostcertainly.Didsherealizethatthebenefitsforherchildwouldlargelyoutweighanyconcernsshemighthavehad?Itsureappearsso.

WewatchedJanetbeempoweredasaparent,andwitnessedherconfidence,love,andsupport.Shehad

thegracetonotonlymeet,buttocompletelyembracehereggdonorJoLana(onnationaltelevisionnoless!)Wefelthersenseofgratitude,andwonder,asshelookedintotheeyesandheldthehandofthewomanwhomadeitpossibleforhertohaveherbeautifuldaughter.Therewasnotadryeyeinthehouse.

Whilesomedonoroffspringandtheirparentsareoverjoyedtoconnectwiththeirhalfsiblingand/ordonorfamilies,someparentsseemtostrugglemuchmorewiththeideaoftheirchildrenconnectingwithdonorrelatives.Decisionsaboutdonorconception,includingtheonesaboutconnectingtounknownrelatives,canbecomplicated,butIsuggestwecansimplifythesedecisionsdowntojusttwochoices,loveorfear.

Fearsmightincludecomplicatingyourlife,oropeningyourfamilyuptoasituationthatmightbeoutofyourcontrol.Thetruthisthatasyourchildgrowsupandheadsintotheworld,theseconcerns,aswellasaplethoraofothers,arerealizedregularly,inoureverydaylivesofraisingchildren.Sowecankeepourkidssafe,atallcost,orgivethemopportunitiestoexpandthemselvesintheworld,andlearnabouttheirownpower,strength,andtheirabilitytoopenthemselvesuptolove.

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Certainly,whenfacedwithopeningourlivestounknowngeneticrelatives,parentsmightfeelfear,confusionorworry.Wecanmakechoicessolelybasedonthesefeelings.Wecanletourfeelingsofinsecurityasparentsholdusback.Whatifmychilddoesn'tlikethem?Whatiftheydon'tgetalongorhavemuchincommon?Whatifmychildlikesthembetter?Howwillthedynamicsofourfamilybechanged?WhatifmychildrealizesthatIhaven'tbeena“perfect”parent?Noneofushavebeen“perfect”parents-andmeetingthedonorisn'tgoingto“out”thisfact(thosewithteenagerscancountonthemtodothis!).

Wehavetheopportunityinthesesituations,tomakeourchoicescominginstead,fromaplaceoflove.Wecanchoosetoseetheopportunitiesinreachingoutandconnecting,cautiouslyandcarefully,expandingourchild's,andourownsenseoffamily.Wecanbeopentothisnewideaoffamilyandseehowitactuallymightstrengthenourrelationshipwithourchild,notthreatenitinanyway.Asparents,wecanbeconfidentandstrong.

Willwehavesomefearsandhesitations?Yes,mostcertainly.Butwecanrealizethatthebenefitsforourchildrencanlargelyoutweighanyconcernswemighthave.Therearenoguaranteesofperfectfamilybonding,justasinanyfamily,noteveryonebondsorconnects.Buttheseconnectionsdohavetheabilitytoempowerusasparentsandgiveusanotherplatforminwhichtoshowourchildrenconfidence,love,andsupportwhenmeetingandembracingthisnewfamily.Honoringourchildren'srighttoexplorethesenewhalfsiblingand/ordonorrelationshipscanonlystrengthenourownbondswithourchildren.Andwhenmeetingdonors,havingourchildrenwitnessoursenseofgratitude,canbeaprofoundandlifechangingexperienceforall.

Parentscan,andshouldputtheneedsanddesiresoftheirchildrentoseekoutandconnectwithhalfsiblingsand/ordonors,abovetheirownfears.Thisistheultimatesacrificethatparentsmakefortheirchildren.Itisalsothegreatestgiftwecangivetoourchildren,andtoourselves.

Therearetwobasicmotivatingforces:fearandlove.Whenweareafraid,wepullbackfromlife.Whenweareinlove,weopentoallthatlifehastoofferwithpassion,excitement,andacceptance.Weneedtolearntoloveourselvesfirst,inallourgloryandourimperfections.Ifwecannotloveourselves,wecannotfullyopentoourabilitytoloveothersorourpotentialtocreate.Evolutionandallhopesforabetterworldrestinthefearlessnessandopen-heartedvisionofpeoplewhoembracelife.~JohnLennon

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30k-60k US Sperm and Egg Donor Births Per Year?

In1988theOfficeofTechnologyAssessmentestimatedthat30,000childrenwerebornviadonorinseminationduringtheyear1986/87intheUS.

Morethanaquarterofacentury-andnofurtherresearch-later,'30,000annualbirths'isstilltrottedoutinacademia,lecturesandthemedia.Sometimesthenumberisdoubled,probablytoallowforthepassageoftime,andoccasionallyarangeof30,000-60,000isdeployed.

Yetsomuchaboutdonorinseminationhaschangedduringthistime.Usingeitherofthewholefiguresisscientificallyunjustifiable,andtherangeisjustasflawed.

Themedia,academics,andother“experts”shouldnotbeusingsuchpatentlyerroneousfigures.Rather,theyshouldbenotingthatthereisnoreliablemethodofassessinghowmanychildrenareconceivedviadonorinseminationeachyear.TheyshouldbepointingoutthattheUSAhasnoaccuratetrackingorrecordkeepingfromwhichitispossibletomakeaneducatedassessment.Andplease,themedia(USandinternational)needstounderstandthatmostpeoplethatusedonorspermdonotutilizeIVF!

Insteadofcomplacentlyrelyingonoutdatedbestguesstimatefiguresfrommorethanagenerationago,theyshouldbedemandingreliable,recentfigures.Theyshouldbevoicingoutragethatneitherthe

fertilityindustrynoranyotherentityisrequiredtocollectdataorreportstatisticsonthenumbersofhumanbeingsconceivedusingdonorsperm.

Eventhoughitissometimesreportedthatnumbersofeggdonorchildrenbornaretracked,morethan40%ofeggdonorparentssurveyedbytheDSRtoldusthattheywereneveraskedtoreportthebirthoftheirchild,andmanyhadneverdoneso,leadingtoincompleteeggdonorbirthtrackingaswell.Thisisinstarkcontrastwithlivestockinsemination,whichismuchmoretightlyregulatedandsurveyed.

Thedonorinseminationlandscapehaschangedsignificantlyfromthe1988report.In1986almostallrecipientswereheterosexualmarriedcouples;nowadays,straightmarriedrecipientsmakeupasmallminority.ParentsontheDonorSiblingRegistryare50%singlewomen,33%inLGBTfamiliesandnowlessthan20%arestraightcouplesfacinginfertility.Whereasin1986themajorityofdonorswererecruiteddirectlybyfertilitydoctors,(orfertilitydoctorsthemselves),mostdonorsarenowspermbankrecruits.

Thenumberofspermbankshasrapidlyincreasedsince1988,ashasthenumberofdonors.Butthegreatestchangeofallistheopportunityforkinshipacquaintance.In1988itwasessentiallyfantasyfordonorsoroffspringtothinktheywouldgettoknowoneanother.Now,inthegenerationfollowingtheadventoftheDonorSiblingRegistry(DSR),andwithDNAtesting,suchknowledgeisalmostanexpectation.Onlyonethingremainsthesame:thegenerallackofcomprehensivemedicalandgenetictestingofdonors,oranymandatoryrequirementtodosobeyondtestingforSTD'sandasmallhandfulofotherdiseaseslikeTaySachs.Theresultisthatsomebanks,testsomedonors,forsomediseases.

Overthelastfifteenyears,theDSRhascollatedthemostcomprehensiverecordsthatcurrentlyexistintheUSA.With47,600worldwidemembers,includingrecordsofover2,400donors,italsoincludesdetailsofhundredsofworldwidespermdistributionfacilities.However,theserecordsareveryincomplete,asallhavebeenobtainedviavoluntaryregistration.

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Forseveralyears,theDSRhasbeenapplyingpressuretospermbanksforthemtomaintaintheirownaccuraterecordkeepingsystem,butprogressinthatdirectionisslow.Andevenifindividualspermbanksdidcreateproperrecords,inorderforthemtobeaccurateandreliabletheywouldneedtobecollatedandintegratedwiththerecordsofeveryagencythattradessperm,asresearchhasshownthat27%ofdonorsdonatetomorethanoneclinic.Thiswouldrequirethatthewholeindustrybeaccountabletoonebody.

Thisisacalltothosequotingthatone-timeestimateof30,000,andtothoseconcernedaboutthepitifullackofoversightwithintheUSspermdonorindustry,tospeakupaboutthelackofreliableinformation

withinthepublicdomain.Weneedtodemandthatfederalmoneybeallocatedtoresearch,overseeandregulatethisindustry,andtodoitinathoroughandcomprehensivemanner.

Inthemeantime,everyoneusingthesefiguresshouldacknowledgethattheyare28yearsoutofdate,andeventhentheywereonlyroughguesstimates.

CartoonbyJenMoore.

*www.DairyCattleRegistry.com,2015.

**www.cattlemax.com,2015.

***USDAReport,2012,alsohttp://www.cattletoday.com/archive/2006/May/CT478.shtmlArticleonPercentagesofDairyCattleConceivedofAI.

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Grandparents via Donor Conception

Therearesignificantcross-generationalrelationshipsthatgametedonationhasengenderedthathaven'tyetbeentalkedabout.

Asdonorconceivedpeopleandtheirdonors(akabiologicalmothersandfathers)arefindingeachothermoreregularlythroughtheDonorSiblingRegistryandthroughDNAtestingwebsites,therearemembersofa

thirdgenerationthatarealsoconnecting-thegrandparents.

Donorsarefindingthatwhentheyconnectwiththeiradultdonorconceivedoffspring,thatmanyofthoseoffspringarenowparentsthemselves.Thesedonorsnowhavetheopportunitytonotonlymeettheirbiologicalchildren,butalsoestablishrelationshipswiththeiryoungdonorgrandchildren.Andwhobettertolavishaffectiononachild,thananewlydiscoveredgrandparent?

Inaddition,parentsofdonorsarelearningthattheyhavebiologicalgrandchildren,notasaresultofthetypicalpatternoftheirchildrenraisingchildren,butratherbecausetheirsonordaughterhasbeenaspermoreggdonorsometimeinthepast.OntheDonorSiblingRegistrywehaveparentsofdonorswhoareinterestedinconnectingwiththeirgeneticgrandchildren.

Some,whosechildrenarenowdeceased,arelongingtoknowiftheirchildrenhaveanychildrenouttherebornfromthedonations.Theverygoodnewsforthedonorconceivedcommunity,isthatthesenewgrandparentsareoftenwelcomingtheirkinwithopen

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armsandhearts,asformanyofthesedonor'sparents,thesedonoroffspringwillbetheironlygrandchildren.

Sometimes,contactcomestoolate.Onedonorconceivedwomanrecentlyexplainedtheheartacheoflearningthatherbiologicalgrandfatherhadrecentlypassedaway:

Ifoundoutthismorningthatmypaternalgrandfatherthroughmydonorunexpectedlypassedaway.Ifoundmybiologicalfatherearlierthisyearthrough23andmeandhavebeenslowlyestablishinganemailrelationshipwithhim,butthingshadnotyethadtimetoreachapointwhereitwouldbetherighttimeformetomeetthatpartofmyfamily.Iwillnevermeetthatgrandfathernow.IhavetothinkthatifASRMandthefolksinvolvedinanonymousdonationunderstoodwhatanonymousdonationreallymeant,thenitwouldstop.Therewasnoreasonformenottomeetmygrandfather.Hewasinhis80s.I'minmy30s.Thereshouldhavebeenplentyoftime--andtherewouldhavebeen,ifIhadhadarighttoknowmyidentityfrombirth,andifusingknowndonorshadbeenrequiredwhenIwasconceived.Ican'tbelievethateveryday,doctorsarecreatingmorepregnanciesthisway.Itblowsmymind....Itjustblowsmymind.

Thesenewfamilialconnectionsarereachingbeyondthedirectlinktoahalfsiblingorageneticmotherorfather,andformanydonor-conceivedpeople,connectingtotheirgeneticgrandparentsgivesthemamoreconcretesenseoftheirfamilialline,theirculturalhistory,andtheirorigins.

Forsomedonor-conceivedpeoplelikeSusan,beyondtheimportanceofmeetingherowngeneticfather,wastheknowledgethathersonwouldgrowupknowingtwoadditionalgrandparents.Sheexplains:

ImyselfrealizedthatIwasnotmyDad'sbiologicaldaughterwhenIwastenyearsold.Iwonderedfromtimetotime.Whowasthemanwhohaddonatedhalfmygenetics?Therewereseasonsinmylifewhenthisquestionplaguedme,andothertimeswhenitwasmerelyapassingthought.ItwasnotuntilIfoundoutthatIwaspregnantthatIfeltanyrealregretatnotknowinghisidentityandeventhenitwasonlybecauseIwouldnothaveacompletemedicalhistoryformychild.

WhenIdidfinallymeetmybiologicalfatheritwasnotaheartwrenchingoverthetopexperience,insteaditwasasenseofdeepcalm;asthoughaveryimportant

piecewasfallingintoplace.Imagineyouhaveajarfullofwaterandsandthatyouhaveshakenuntilitwascloudy,andthenimagineyousetthejardownandinstantlythesandsettlesandthewaterclears.Thatishowitfelttomeethim.Itwasanareaofmylifethathadalwaysbeenunclearandrathersuddenlyitwastransparent.Herewasamanwithmynoseandmyhands,anartistandanempath.

Asamothermyselfnow,myfeelingshavechangedandmyprimaryjoyisinthefactthatmysonhastwomoregrandparents,achildcanneverhavetoomanygrandparents!ToloveandbelovedbysomanyissuchagiftthatIamhumbledbydaily.AsItoldmybiologicalfatherandhishusbandwhentheyaskedmehowIfeltthefirsttimewemet,Iamthemandtheyareus,forbetterorworse,we'refamily.I'msogratefulwelandedsafelyonthesideofbetter.

Andforsomedonors,meetingtheirgrandchildrenandhavingtheopportunitytoparticipateandbeapartoftheirlivesisalife-alteringopportunity.RoberttellsusaboutmeetingSusanandhisgrandson:

Imadecontactwithmydaughter,whosaidthatshehadbeenlookingformesinceshewasachild,andshewantedtomeetmeandtointroducemygrandson.Werecognizedeachotherimmediately,onfirstmeeting,andIfeltafamiliarityandaffectionthathasgrownwitheachsubsequentvisit.Ifeelincrediblylucky.

In2013weconductedandpublishedresearch*ontheparentsofspermandeggdonors.Wewantedtoknow

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abouttheirexperienceswithconnectingtochildrenbornfromtheirchildren'sdonations.Weaskedrespondentstoindicatetheirthoughtswhentheyfirstlearnedoftheexistenceofadonorconceivedgrandchild.Allbutafewoftherespondentswantedtolearnmoreabout,ortohavesometypeofcontactwith,thechild.Forinstance,68%“wantedtolearnmore”and42%“wantedtomeetthemassoonaspossible.”

Weaskedforthemainreasonforreachingouttotheirdonor-conceivedgrandchild.Thirty-ninepercentofrespondentsindicated,“SincetheywerecreatedwithmyDNA,thechildispartofme”asthemainreasontoreachout,and“Theyaremygrandchildren”wasselectedbyanother33%.

MyownsonRyanwasgiventheopportunitytomeethisbiologicalfatherandgrandparentswhenhewas15.Becauseofthis,hegainedtwoadditionalgrandparentswholovehim,andwhohaveenrichedhislife.Weareallextremelythankfulthatwe'vehadtheopportunitytoshareourliveswitheachotherfor

thepasttenyears.BothRyanandIcannotimaginenothavinghadthisbranchofourfamilyasapartofourlivesforthepastdecade.

Atonepointearlyonthough,Ryan'sdonor-grandmothersharedwithmethatwhileoverjoyedaboutbeingabletoestablishthisnewfamilialrelationshipwithhergrandson,shedidfeelsomesadness,andactuallyneededtogrieveforthemissedfirst15yearsofRyan'slife-thefirststeps,birthdaysandmilestonesnowlonggone.

Wecanonlyhopethatthereproductivemedicineindustryislisteningtothesestories,andwillstopworkingsohardtokeepthesegeneticrelativesfromknowingeachother.

*TheJournalofFamilyIssues,DOI10.1177/0192513X13489299May2013:ANewPathtoGrandparenthood:ParentsofEggandSpermDonors.DianeBeeson,PatriciaJennings,WendyKramer.Otherreading:TheVitalImportanceoftheGrandparent-GrandchildBond

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Donor Conceived People and the Reproductive Medicine Industry Disconnect

It'saninnatehumandesiretowanttoknowwherewecomefrom.It'simportantforbothourmedicalandpsychologicalwellbeingtoknowaboutourbiologicalfirst-degreerelatives,ourancestry,ourmedicalbackgrounds,andourgenetics.

Whiletheremaybesomedonor-conceivedpeoplewhodon'thaveadesiretoseekouttheirhalfsiblingsorbiologicalparents(justasinadoption),manymoredoindeeddesiretosearchforandtofindtheirrelatives.Someformedicalreasons,andsomealsofeeladeepandpainfullossfrombeingdisconnectedfromtheirgenetickin.RebeccaH.explains(inthebookVoicesofDonorConception:MovingBeyondSecrecyandShame):

Myfeelingsaredifficulttoexplaintopeoplewhotaketheirrootsforgranted.Anadoptedpersononcedescribedthesensationofwhatisnowtermed

'genealogicalbewilderment'ashavingtodrivethroughlifewithoutaroadmap.Ifindittobeanaptdescriptionofmysituation.PeoplewhoknowbothoftheirbiologicalparentsfindithardtograsptheenormityofwhatIammissing.Simplyhavinginformationaboutthesortofpeopletheyare,andwhatthingstheyarecapableofdoing,createsabaselinethatyoudon'trealizeiscomfortingunlessyouhavetolivewithoutit.

ForthousandsontheDonorSiblingRegistry,connectingwithformerlyunknownbiologicalrelativeshasleadtobettermedicalcareandscreenings,agreatersenseofself-understandingandhasbeenaveryimportantcomponentofidentityformation,andformanydonoroffspring,longbeforetheageof18.Properacknowledgement,respectandattentionforthepeoplewhoaresufferingmostwiththislackofgeneticknowledge,bothpsychologicallyandmedicallyisdesperatelyneeded.

Donorconceivedpeoplefollowinthepathofadopteesinthearenaofdisclosure,alongwiththerighttosearchforandknowabouttheirorigins.TheAdoptionCongress(2007)statesthefollowingintheirAssistedReproductionTechnologyStatement:

TheAmericanAdoptionCongressbelievesthatallindividualswhosegeneticandbiologicaloriginsaredifferentfromthoseoftheirlegallyrecognizedfamilieshavetherighttoknowthoseorigins.Thisincludespeoplecreatedthroughthedonationorsaleofeggsorsemen,thetransferofembryos,gestationalsurrogacies,oranyotherreproductivetechnology.Knowledgeofone'soriginscanbevitaltothepsychologicalandphysicalwellbeingofhumanbeings.Denyingapersonthisinformationcanhavepotentially

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seriousconsequencesuponthatperson'sfamilyrelationships,healthandreproductivechoices.

OntheDonorSiblingRegistrygroupdiscussionpage,onedonor-conceived(D.C.)adultexplains:

Knowingthatthefertilityindustryprofitedfromtheactofdeliberatelydisconnectingmefromhalfofmybiologicalfamilyhasleftmewithaconstantsenseofhavinghadmyrightsviolated.

SomuchhasbeenwrittenbyD.C.peopleaboutwhylosingaconnectiontoaparentthroughparentalromanticdecisionsandchanceisnotthesameashavingthatconnectionseveredbyanindustrythatbrokeredyoursale.D.C.peoplecanbegratefultoexistandtohavebeenwantedbytheparentswhoraisedthem,andstillfeelpain,frustration,andangeraboutthecircumstancesoftheirconception.IwishthattheparentsofDCpeoplewouldstopseeingtheirchildren'spain,frustration,andangerasabadthingorasanundesirableresult.

Pain,frustration,andangerarenaturalandgoodresponsestoinjustice.Sorrowandgriefarenaturalandgoodresponsestorejectionbyabiologicalparent.Ourangerandourgriefcanbefueltoadvocateforregulationsthatrespectourrights.Ouremotionsarenottheproblem;theproblemishavinghumanbeingsbeingtreatedasaproductbythefertilityindustry.

Donor-conceivedpeoplearebeingdeniedthebasicrighttoknowtheirorigins,andhavebecomeavoicelessminorityinoursociety,withoutthenecessaryinformationtomakeinformedandcompetentdecisionsabouttheirownpsychologicalandmedicalcare.TheUSSurgeonGeneralreportsontheirwebsite:

Arecentsurveyfoundthat96percentofAmericansbelievethatknowingtheirfamilyhistoryisimportant.”TohelpAmericansfocusontheimportanceofknowingfamilyhealthhistory,TheUSSurgeonGeneralalongwiththeDepartmentofHealthandHumanServicescreatedthe“FamilyHealthHistoryInitiative.”Thewebsitenotesthat,“Tracingtheillnessessufferedbyyourparents,grandparents,andotherbloodrelativescanhelpyourdoctorpredictthedisorderstowhichyoumaybeatriskandtakeactiontokeepyouandyourfamilyhealthy.

TheAmericanMedicalAssociationagreeswiththeimportanceofknowingyourfamilymedicalhistory:

Gatheringacompleteandaccuratefamilymedicalhistoryisextremelyimportantasgeneticmedicineexplainsmorediseases.

InGeneticsHomeReference,theNationalLibraryofMedicine'swebsiteforconsumerinformationaboutgeneticconditionsandthegenesorchromosomesrelatedtothoseconditions,hasthistosayabouttheimportanceofknowingyourfamilyhealthhistory:

Afamilymedicalhistoryisarecordofhealthinformationaboutapersonandhisorhercloserelatives.Acompleterecordincludesinformationfromthreegenerationsofrelatives,includingchildren,brothersandsisters,parents,auntsanduncles,niecesandnephews,grandparents,andcousins.

Familieshavemanyfactorsincommon,includingtheirgenes,environment,andlifestyle.Together,thesefactorscangivecluestomedicalconditionsthatmayruninafamily.Bynoticingpatternsofdisordersamongrelatives,healthcareprofessionalscandeterminewhetheranindividual,otherfamilymembers,orfuturegenerationsmaybeatanincreasedriskofdevelopingaparticularcondition.

TheCentersforDiseaseControlandPreventionwebsitesays:

Familyhealthhistoryisausefultoolforunderstandinghealthrisksandpreventingdiseaseinindividualsandtheircloserelatives.

TheUSSurgeonGeneral,TheCDC,TheNationalLibraryofMedicine,TheUSDepartmentofHealthandtheAmericanMedicalAssociationallstresstheimportanceofknowingone'sfamilyhealthhistory.AndtheAmericanAdoptionCongressadditionallyacknowledgesboththemedicalandthepsychologicalimportanceofknowingaboutone'sorigins.

Adonor'smedicalprofile(sometimesincludedwhenapersonbuysspermoreggs)isasnapshotinthelifeofahealthyyoungdonor,anddoesn'treflectwhathappensthenextyear,orafterwardstoadonororhisorherimmediatefamily(siblings,childrenorparents).Additionally,manymedicalandpsychologicaldiseasesareadult-onsetsodonorscouldn'tpossiblyreportthematthetimeofdonation.Somedonorsarenotsureabouttheirrelative'sdiseases,andsomearenothonestwhenfillingoutthemedicalprofile,afraidthatiftheytellthewholetruth,theywillnotbeacceptedintothedonorprogram.

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TheDonorSiblingRegistry'sMedicalPagelistshundredsofreportedmedicalissuesfromdonor-conceivedpeople,theirparentsandthedonors.Someofthesemedicalissues,likeHypertrophicCardiomyopathy(HCM),aseriousheartcondition,havebeensharedinlargehalfsiblinggroups.ThesharingofthismedicalinformationamongsthalfsiblingfamiliesontheDSRhassavedlives.

Researchshowsthat84%ofsurveyedspermdonorsand97%ofsurveyedeggdonorssaythey'veneverbeencontactedforanymedicalupdates.23%ofthosespermdonorsand31%ofthoseeggdonorssaidthattheyfeltthatthey,orclosefamilymembers,hadmedical/geneticissuesthatwouldbeimportanttosharewithfamilies.

Oneformerspermdonor,nowadoctor,saidinalettertotheJournaloftheAmericanMedicalAssociation(theletterwasneverpublishedbyJAMA):

ThispracticewasfirmlyentrenchedinthemedicalcommunitylongbeforetheDNArevolutionprovidedthetoolstodiscovergeneticrelativesandthebasisofmanyhumandiseases.Ourincompleteknowledgeofthesegeneticfactorsimpliesthatassessingthefamilyhistoryofailmentsisstillanessentialelementofmedicaldiagnosis.Alsoignoredintheseearlierprocedureswasthefactthatthechildrenresultingfromanonymousgametedonationweredeprivedoftherighttoknowhalfoftheirancestry,whichisnow

recognizedasafundamentalhumanright.Frommyviewpoint,medicaldoctorswhotooktheHippocraticoath,andwhowereeitherspermoreggdonors,aremorallyobligatedtoallowtheirbiologicalchildrenaccesstotheirfamilymedicalhistory.

Somedonorssaythattheyhavecalledinanewmedicalissuetothebankorclinic,andhavebeenpromisedthatitwouldbepassedalongtofamilies-butwhenthefamilieshavecalledintheyhavebeentoldthatnomedicalissueshaveeverbeenreported.Thefactthatfertilityindustryeconomicswouldsubvertthemedicalandpsychologicalcareofadonorchildisunconscionable.

Inadditiontoconductingandpublishingmanyresearchstudies,theDonorSiblingRegistrynowhasmorethan47,300donors,parentsandoffspring,manyofwhomhavesharedtheirstories.Whereistheattentionfromthereproductive,medicalandpsychologicalindustries,andtheoversighttoensurethatalldonor-conceivedpeoplehavetherighttotheirownorigins,genetics,ancestryandpersonalmedicalhistory?

CartoonIllustrationbyJenMoore,OutreachDirector,DonorSiblingRegistry,andmothertotwoteen-ageddonor-conceivedsons.http://www.hhs.gov/familyhistory/FamilyHistoryisImportantForYourHealthhttp://www.cdc.gov/genomics/public/file/print/FamHistFactSheet.pdf

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The Voting Booth of Sperm and Egg Donor Anonymity

“NobodyaskedmewhatIwanted,”saidonedonor-conceivedyoungwomaninher20s.“Ijustwishthe(spermandeggbanks)wouldconsiderthisfromthechild'spointofview.”

AspiritedDonorSiblingRegistrygroupdiscussionbeganaftermyrecentHuffingtonPostblogswerepublished.

Parentsofdonor-conceivedchildrenwereoverwhelminglyonthesideofdonorkidshavingaccesstotheirancestral,medicalandgeneticinformation,withonedissenterparentpointingoutthatshefearedthatthespermsupplywould“dryup”ifanonymousdonationswerebanned.

Thisisamythperpetuatedbythereproductivemedicineindustryandthemedia.Infact,since2005,whentheUKbannedanonymousdonations,orrathergaveadonor-conceivedchildtherighttoknowdonorinformationatage18,theUK'sHFEAwebsitereportsthattheirspermandeggdonornumbershavegrownsignificantly.Thereasonswhycouldbeinpartbecausethestigmaandfearsoftheunknowninpastanonymousspermdonationhavedissipated,becausedonorbanksmayhavesteppeduptheirdonoroutreachprograms,andperhapsbettereducationaboutdonatinghasspurredanewtypeofmaturedonorwhocanrespecttheneedtobeknownbyanychildrenhehelpstocreate.

Let'sjustsaythatendingdonoranonymityintheUSdidresultinadecreaseindonors.Doestheendalwaysjustifythemeans?Wecurrentlydonothaveenoughorgandonorseither,butdonotresorttounethicalmeasurestoprocurevitalorgans.So,aswithsperm

andeggdonors,theremightnotbeenoughforeveryonewhowouldlikeachild.Butthatcan'tjustifyanonymousdonation.Weneedtostopsacrificingtheneedsofdonor-conceivedpeopleforthe“reproductiverights”ofparents,atanycost.

Intherelevantdiscussionondonoranonymity,whilethemajorityofdonor-conceivedparentsinthediscussionwereinsupportofanyandallinformationdonorchildrenwantedtoseekout,oneparentclaimedthather11yearoldwantednothingtodowithknowinghisgeneticrelativesorinformation.

Interestingly,onedonorconceivedadultthensheepishlyadmittedthatshehadalwayswantedtofindhergeneticrelatives,butshehadbeenafraidtotellhermotherforfearofupsettingher.Severalparentsthenechoedthesamesentiments,andonesaid,“Childrenwilloftenemulatebehaviorthattheyfeelpleasestheparent,whiletheirtruefeelingscanbeburiedunderthebasicneedtobeaccepted.”

Afteraheartfeltdiscussion,thegroupcametotheconclusionthatALLchildren,especiallydonorconceivedkids,absolutelyhavetherighttoknowwheretheycomefrom,nomatterwhattheprioragreementshavebeenwithanonymousdonors.Althoughdisclosure,or“telling”maybethefirststepwithdonorchildren,it'sjustthebeginningoftheconversation.Itthenbecomesimportanttobothhonorandsupportanycuriositiesthatachildhastoconnectwiththeirfirst-degreegeneticrelatives.Itshouldbemadeveryclearthatthetopicisopenfordiscussionandanyfearsthataparentmighthaveaboutconnectingwithunknowndonorrelativesshouldbeplacedontheirbackburnerand/ordealtwiththroughcounseling.

Someparentsstatedthatsincethattheymadeanagreementtouseananonymousdonor,theyfeltethicallyboundtostayawayfromtryingtogaininformation,whileseveraldonorconceivedchildrenrebuttedthattheseprioragreementsweremadeonlybetweenthedonor,theparents,andthespermbank--notthechild,whohasneverhadavoteinthematter.

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Co-authorJenMoore,whose2boysweretoldthattheyweredonorconceivedin2014,addedtothediscussion,“I'vebeenaskedrepeatedly:'WillIevermeetmydonor?'and'WillIevergetapictureofmydonor?'It'sreallysadforaparenttoknowthatthereisnowaytoanswerYESingoodconscience.”

InaDSRresearchsurveyof751donor-conceivedoffspring,83%ofthemwhoarenotincontactwiththeirdonors,wishtobe.Inaddition,morethanthreequartersofallsurveyedoffspringstronglyrecommendthatparentsusean“open”or“willingtobeknown”donor.

Tomakeacaseforopendonors,theDonorSiblingRegistryresearchreports[LINK]thatover94%ofsurveyedspermdonorswereopentocontactwiththeoffspringtheyhelpedtocreate.Sadly,somecannotgettheirspermbankstoeventellthemtheirowndonornumbersorreleasetheirinformationtosearchingchildren,evenwhenbothsidesareactuallyaskingtobeconnected.

Nomatterhowlongthespermbanksdesperatelyhangontotheideaofanonymousdonation,donorswon'tbeinhiding,bychoiceorotherwise.YanivErlich,Ph.D.,anassistantprofessoratColumbiaUniversityandacorememberoftheNewYorkGenomeCenter,surmised,“Therecentestimatesarethat3millionpeopleweretestedwithFamilyTreeDNA,AncestryDNA,and23andMeforthefullautosomaltests.Thenumberisgrowingquickly,and23andMeaddedhalfamillionpeopleinthelastyear.It'sbeenreportedbytheentitiesthatoperatethirdpartywebsitestoanalyzegenomicinformation,thatthecompaniesareexperiencedadoublinginthenumberofparticipantseachyear.”

WhilenoneofthemajorsitesreportingissuingfutureprojectionsonDNAtesting,usingYanivErlich'sinformation,combinedwiththecorrelatednumbersreportedrelativeto23andme.com[LINK](300,000genotypedpayingcustomersinlate2013,650,000inearly2014,andover1,000,000inMay2015),theestimatedpopulationsthatcouldhavetheirgenotypeinsomesystemby2020couldexceed14millionormore.

Tobringthingsintoperspective,afirstcousingeneticrelationshipon23andme.comcanbebetweena7%-13%geneticmatch.Itwouldbeextremelydifficultpastthisleveloftransparency,withnamesandemails

beingtradedalongwithfamilyhistories,foranydonortoremainanonymous.

AuthorandlawprofessorJulieShapiroalsochimedin,respondingwithherownblogarticleentitled,“FacingtheEndofAnonymity.”Shewrites,“Itseemstomethatquestionsaboutthevalueofanonymity,andthewaysinwhichthelawshould/shouldnotprotect/promoteitarebeingoutflankedbyreality.”Shegoesontofirmlystatethatnoone(spermoreggbanks)cantrulypromiseanonymityanymore.“It'sirresponsible,andperhapsevendishonest,todoso.”

Still,spermandeggbanks,whohaveenjoyedfreereigntogiveandtakeawayinformationfromdonorchildren,seemtoremainblind,deafanddumbtowhatisinfrontoftheirfacesrelatedtotheadvancesofpsychology,sociologyandgeneticscience.Wehavetowonder-whentheAmericanSocietyofReproductivemedicinewillstartinvitingdonorconceivedpeopleintothediscussionforsettingpoliciesandrecommendationsfortheirindustry?Howcanitbethattheverypeoplewhoarebeingcreatedbythesereproductivemethodologiesstillhavenovoiceinthematter?

Regardlessofthedimminghorizononanonymitybroughtbytheready-packagedrealitiesofDNAgenealogy,thereremainstheplaintivepleaofthelong-ignoreddonorchildwho,forgenerations,hasbeenkeptinawonderingstate--wanderingbetweenwhattheyknow,whattheycanfindoutbydigging,andwhataboutthetheirancestral,medicalandgenetichistoryisbeinghiddenfromthem.Theyarelefttowonderwhytherightsofthespermbanksandclinics(tomakemoney)andtheparents(tohaveachild)andthedonors(whoatthetimeagreedtoanonymity)alwaystrumpedtherightsofdonor-conceivedpeopletoknowwheretheycomefrom?It'shightimetohumanizethedonorconceivedandallowthemtheirownspaceinthevotingboothofdonoranonymity,withthe“polls”alreadyshowingasweepingvictoryinfavorofknowndonors.

Co-writtenwithJenMoore,OutreachDirector,DonorSiblingRegistry,andmothertotwoteen-ageddonor-conceivedsons.CartoonIllustrationalsobyJenMoore

ReferencesDonorSiblingRegistry(DSR)(2015).15thYearInformationBooklet.RetrievedonlineJuly17,2015athttps://www.facebook.com/download/395409610650666/Law%20School%20Powerpoint%20FINAL.pdf

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2011HumanReproduction:Offspringsearchingfortheirspermdonors:howfamilytypeshapestheprocess.Authors:DianeBeeson,WendyKramer,PatriciaK.Jennings.doi:10.1093/humrep/der202

JulieShapiro,Blog,

https://julieshapiro.wordpress.com/2015/08/09/facing-the-end-of-anonymity/23andMeBlog,byAnneWojcicki,http://blog.23andme.com/news/one-in-a-million/1.ExcerptsfromaninterviewwithYanivErlich,PhD,AssistantProfessorofComputerScience,Columbia

University;CoreMember,NewYorkGenomeCenterNewYork,NY2.HowManyPayingCustomersdoes23andMehave?AlexKomenko,http://www.quora.com/How-many-paying-customers-does-23andMe-have

3.AveragePercentDNASharedBetweenRelativeshttps://customercare.23andme.com/hc/en-us/articles/202907170-Average-percent-DNA-shared-between-relatives

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Sperm Donors Who Wish to Remain Anonymous Just Shouldn't Donate.

MysonRyanandIwerecontactedbyFamilyTreeDNAin2004,astheythoughtthattheirnewcommercialDNAtestingcapabilitiesmightbeusefultoRyan,andtotheothersinourcommunityofdonorconceivedpeopleattheDonorSiblingRegistry.Atthattimewethoughtitmightbepossibletofindoutmoreaboutone'sancestryandcountriesoforigin.Ryanwasexcitedtolearnmoreabouthis“invisible”paternalancestry,soquicklyagreedtoswabhischeek,sendinhissampleandseewhathemightlearn.Hebecametheoneofthefirstdonor-conceivedpeopletothrowhisDNAintoapublicDNAdatabase,makinghimselfavailabletoconnectwithpreviouslyunknowngeneticrelatives.

Atfirst,hedidlearnabitmoreabouthispaternalancestry,specificallyaboutcountriesoforigin.HelearnedthathewasmostlyEnglish,withsomeIrishandevenabitofIcelandic(whichhethoughtwasprettycool).Healsomatchedwithpeopleonhis12and25YChromosomeDNAmarkers,whichmeantthatcommonancestorsrelatedthemfromhundredsoreventhousandsofyearsago.Andfor9monthshewascontentwiththatlittlebitofinformation.

NinemonthsaftersubmittinghisDNA,hehadhisfirstmatchesonthe37Y-DNAmarker.Hematchedwithtwomen,samelastname,whodidn'tknoweachother,butwhohadfiguredouttheirsamecommonancestorwholivedinthe1600's.BecauseRyanmatchedwithboththesemen,astheymatchedwitheachother,itwasdeterminedthatRyanalsohadthesamerelativefromthe1600's.Thetwomen,andthiscommonancestorallhadthesamelastname.Itwaswiththislastname,andabirthdatefromthedonorprofile(thatthedonorfilledoutatthespermbankwhenhedonated),thatwithindays,(withGoogleandapublicrecordsdatabase),wefiguredoutwhomyson'sbiologicalfatherwas.Contactwasmade,andour

familyinstantlyexpanded.Whenourformerlyanonymousdonorwasgiventheopportunitytoknowmyson,hegladlyaccepted.ManydonorssincethenhavealsoconnectedwithoffspringonDNAsites,aswellasontheDonorSiblingRegistry.

WiththeincreasedvolumeinthegeneralpublicswabbingorspittingforDNAdatabases,nowwhendonorconceivedpeoplespitintoacylinderorswabtheircheekandsenditintocommercialDNAtestingsiteslikeFamilyTreeDNAor23andme,thereisaverygoodprobabilitythattheywillconnectwithdistant,orevencloserelatives.Thisincludeshalfsiblingsandorgeneticmothersandfathers,sonsanddaughters.Donoroffspringhaveeveryrighttosearchfor,andtomaketheseconnections,ofcourserespectingtheboundaries,wishes,andprivacyofthosetheyconnectwith,likeanyotherpersonreachingouttotheirunknowngeneticrelatives.

Fordecades,therightsofdonorstoremainanonymoushavebeenfirstandforemost.Thereproductivemedicineindustryhasworkedveryhardtokeepdonoroffspringfromknowingtheirgeneticparents.Somebanksandclinicsevenrefusetogivedonorstheirowndonornumbers,makingitdifficulttomakemutualconsentcontactontheDonorSiblingRegistry.Somebanksdonotevenconnectdonorsandoffspringwhobothcallintotheclinictorequestthattheybeputintouchwitheachother.Evenbanksandclinicswith“open”donors,onlysometimesconnectoffspringwithdonorsatage18,astherearenoguarantees.

InthisdayandageofcommercialDNAtesting,here'smyadviceforprospectivesperm(andegg)donors:ifyoudon'twanttobeknowntoyouroffspring,justdon'tbecomeadonor.Becauseevenifdonorsdon'tsubmittheirownDNA,chancesarethatsomeknown,ordistantunknownrelativesoftheirs,havespitorswabbed,andthismakesdonorsveryfindable.Mysonmayhavebeenthefirsttolocatehisdonorwiththisnewmethodology,buthecertainlywasn'tthelast.

Ifyouareaformerdonorandthinkyou'llneverbefound,itmightbetimetostarteducatingyourselfaboutwhatdonorconceivedoffspringarelookingfor

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whenreachingouttotheirgeneticmothersandfathers.Wehaveheardfromthousandsofthem,ontheDSRandthroughresearchprojectsandweknowthattheyarenotlookingtoinvadeordisruptyourlife.Theyarenotlookingforanactiveparent.Theyarenotlookingformoney.Theyjustwanttoknowwheretheycomefrom-theirgeneticandmedicalhistory,alongwiththeirancestry.

Someoffspringdolongtomeetandtoknowtheirgeneticparents.And,ifrelationshipsevolveafterconnecting,thenthat'sicingonthecakeforallinvolved.It'snowtimethattherightsofdonorconceivedpeopletobecuriousabout,searchfor,andconnectwiththeirfirstdegreegeneticrelativesareacknowledged.

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Roots and Wings for Donor Offspring

Thereareonlytwolastingbequestswecanhopetogiveourchildren.Oneisroots;theotherwings.

ThisHoddingCarterquotehasbeenthetaglineonmyDonorSiblingRegistrye-mailsformanyyearsnow.ThisweekIspokewithaneggdonormomwhoquestionedmeaboutit,askingifIinterpretedthequoteasmeaningthatdonorconceivedchildren's“roots”arefromthegeneticparent(s)andtheparentsthatactuallyraisethechildsupplythe“wings,”sayingthatshefeltlikeshewasbothtoheradultson.

Tome,thequotemeansthatweparentsoweourchildrenboth:rootsandwings.It'snotjustoneortheother.Parentswhoraisedonorchildrendoprovidebothrootsandwingsintheformoffamily,securityandinstillingourchildrenwiththeconfidenceandthetoolstoflyontheirownoneday.Alsothough,wedoneedtoacknowledgethe“other”significantpartoftherootsthatwemightnotbeabletosupplyandthatmightbeveryimportanttoourchildren.

Sosure,parentswhoraisechildrencertainlydoprovideboth.But,thereisanotherpersonwhoalsocontributedtoourchildren'sroots:halftheirancestry,DNA,andmedicalhistorydocomefromtheotherbiologicalparent.

Onceagain,wehituponthenotionthatsomeparentsliketothinkthatthedonorisjusta“pieceofgenetic

material”oronlya“donatedcell.”Butinfactformanydonor-conceivedpeople,it'smuchmorethanthat.TheyhaveanunknownpersonwhocontributedhalftheirDNA,theirancestryandtheirmedicalbackground:threeveryimportantpiecesthatcontributesignificantlytowhoapersonis.

Justlikeinadoption,somekidsarenotverycurious,andsomeareextremelycurioustoknowaboutthedonor.Andasinadoption,familiesneedtobesupportivewithwhichevertypeofchildtheyget.Oryoumightendupwithresentfuloffspring;angeredthatkeepingthesecretwasmoreimportantthantheirrighttothetruth.Or,fearfuloffspringprotectingtheparentsthathaven'tyethealedfromthepain/shameofinfertility.That'snottheirburdentocarry.It'snottheirshametocarryon.ToomanyoffspringcometotheDonorSiblingRegistryinsecrecy,behindtheirparents'backs,afraidofhurtingorangeringthem.

Secrecydoesimplythatthereissomethingshamefulaboutthemethodologyofconception.Donorconceptioncanbetalkedaboutopenlyandhonestlybetweenlovingparentsandtheirdonorchildren.Tellingisjustthebeginningthough.Andhavingacuriouschildinnowaylessonsyourimportanceorsignificanceasaparent.Itisaninnatehumandesiretowanttoknowwherewecomefrom.

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The Ethical Sperm Bank: An All-Open Sperm Bank. An Idea Who’s Time Has Come.

Aculturalphenomenonisgrowingthesedaysintheworldofgametedonation.Thevoicesofthedonor-conceivedaregrowinglouderandclearer,andthevastmajorityexpressthatknowingorhavingknowntheidentityoftheirdonorsisbetterthannotknowing,psychologically-speaking.Fromactivelylisteningtothem,welearnthathavingacompletesenseofone'sbiologicaloriginsfostersamorewholeidentity,whichcanpositivelyimpactself-confidence(nottomentiontheimportanceofknowingone'sfamilymedicalhistory).Theyalsopreferknowingandconnectingwiththeirhalf-siblings,justasanyonewouldwanttoknowtheirfirst-degreegeneticrelatives.Furthermore,thevastmajorityofsurveyeddonorsshowthattheynotonlythinkaboutthechildrenthey'vehelpedtocreate,butalsoindicateastrongpreferencetowardbeingabletoknowthem.Theextantresearchcorroboratestheseexperiences(DSR,2015).

Althoughanonymousgametedonationisbannedin11countriesatthetimeofwriting,theUnitedStatesstilllagsbehindinmakingsuchanethicaldetermination.Therearenumerousobstaclestobanningdonoranonymityinthiscountry.Inthemeantime,theavailabilityofall-opengametedonationclinicswouldofferanalternativeoptiontothosewhowanttodotherightthingfortheirchildrenwhilesupportingorganizationsthatfollowthisprincipleasamatterofregularpractice.Sincemanyeggdonationclinicsarealreadyofferingethicaloptions,weofferasketchofwhatanidealspermdonationclinicwouldbelike.ItwoulddifferfromexistingU.S.spermbanksinthreemajorareas.

OpennessandContact

Firstandforemost,anall-opengametedonationclinic,whichwe'llcallTheEthicalSpermBank,wouldrequire

alldonorstomakethemselvesavailableforcontactwiththeiroffspringatanyage.Thedonorswouldsharephotos,answerquestions,shareinformationaboutthemselves,providefamilymedicalhistory,and,optionally,havesomerequiredin-personmeetings.

Thereasonbehindfosteringcontactatanyage,andnotjustoncetheageof18isreached,isthatidentity-formationbeginslongbeforethelegalageofadulthood.Thisistheagetypicallychosenbythoseclinicswhoprofesswillingnesstofacilitatecontactastheacceptabletimeforfirstoffspring-donorcontact,strictlyoutofliabilityconcerns;theageof18isnotchosenbecauseitisthehealthiestageforoffspringtofindoutwherehalfoftheirgeneticscamefrom.Theoristsonidentityformation,suchasErikErikson,statethatthemostsignificantperiodofidentityformationisadolescence-yearsbeforelegaladulthood(Brogan,2009).Curiosityaboutdonorsandhalf-siblingshasalreadybeenexpressedbytensofthousandsofdonor-conceivedpeopledesiringtoknowtheirfirst-degreegeneticrelativeslongbeforetheageof18(DSR).

AtTheEthicalSpermBank,donorcontractswouldstatethatdonorsarerequiredtomaintainapostingontheDonorSiblingRegistry(DSR),a501c(3)charityhelpingmorethantwelvethousandfivehundreddonor-conceivedpeopletoestablishmutualconsentcontactwithbothdonorsandhalf-siblingssince2000.Thiswouldprovidedonorstheabilitytoconnect,shareandupdateinformationwithfamilies,andrespondtopersonalmessages.Usingthesystemprovidesasenseofempowermentandsafetytousersastheycanhavecompletecontroloverallsharingofinformation,therebysafelyconnectingwithdonors/offspring/half-siblingsandtakingtheprocessasslowlyasiscomfortable.

FamiliesanddonorsontheDSRareanonymoustoeachotheruntiltheyvoluntarilysharepersonalcontactinformationwitheachother.Thissystemiscurrentlybeingutilizedandpromotedbymanyeggdonationclinicsandagencies.Shouldthedonorrefuseallcontactwithhisoffspring,hewouldbeinbreachofcontract,andlegalconsequenceswouldfollow.

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Similarly,theintendedparentswouldsignacontractstipulatingthattheywillalsoopenaDSRaccountandaddtheirpostingwhenthechildisborn.Theircontractwouldrequirethattheynotrestricttheirchildfromknowingofhisorhergeneticoriginsormakingcontactwiththedonor/siblings.Obstructingtheprescribedprocesswouldbeconsideredabreachofcontract.Asanaddedbenefit,TheEthicalSpermBankwouldmaintainupdatedcontactinformationforalldonorsandfamiliesandfulfillrequestsinanhonestandefficaciousway.

BesidesmandatorypostingontheDSR,donorsandrecipientswouldhavetheoptionofalsosigningacontractmandatingthatdonorsmustmeettheiroffspringinpersonatleastoncebeforetheageof10(beforeoraroundthestartofpuberty),oncemorebetweentheagesof10and18(forcontinuedidentityformationanddevelopmentofself-knowledgethroughtheteenyears),andonanynumberofadditionaloccasionsifmutuallydesired.Evidencethatthetworequiredmeetingsoccurredwouldneedtobesubmittedtotheclinic,intheformsofaphotographorvideoandlettersfrombothparties.

Thefactthatdonorsrelinquishallparentalrightsandresponsibilitiestowardtheirgeneticoffspring,asperstandardlegalpractice,wouldgiveparentspeaceofmindandrelieveanyfearsoverlosingtheirchildtothedonor.Thedonorwouldalsoagreenottointrudeuponthefamily'sprivatelives,orbeinvolvedinparentingwithouttheparents'expresspermission.Inturn,thefamilywouldagreenottocontactthedonors'family,friends,employers,orotheracquaintances,orpublicizethenatureofthedonationwithoutexpresspermissionfromthedonor.

Theintendedparentswouldbeeducatedontheinherentdesire,benefits,andimportanceofaperson'srighttoknowtheidentityofbothbiologicalparentsandwouldgiveinformedconsentbeforeproceedingwithinsemination.Anyintendedparentwhodoesnotagreetothetermswouldbedisqualifiedfromtheprogram.But,becausethepracticesandphilosophyoftheclinicwouldbewell-publicizedanddisplayed,onlyparentswhoareopentothiswayofraisingtheirdonor-conceivedchildwouldlikelyconsiderworkingwiththeclinicinthefirstplace.Asgreaterpublicawarenessdevelopsonthisissue,thedemandforsuchpracticesmayriseovertime.

RecordingandReportingBirths

ThesecondmajordifferencefromexistingU.S.spermbanksisthatTheEthicalSpermBankwouldconscientiouslyrecordandopenlyreportthenumberoflivebirthsperdonor.Thispracticecouldfostergreaterresponsibilitybecauseitwouldenablethebanktoaccuratelylimitthenumbersofbirthsperdonorandgiveparentsandoffspringanideaofhowmanyhalf-siblingstoexpect.Parentstoomaynaturallyveerawayfromcreatingascenarioofexcessivenumbersuponseeingthatadonoralreadyhasnumerousoffspring.

Carefullimitingofthenumbers,guidedbyresearch,wouldallowfortheavoidanceofconsanguinityandsocialoverwhelmonthepartofdonorsandoffspring;therewouldbealowerchanceofhalf-siblings,cousins,orotherunwittingrelativesdatingeachotherandbecomingphysicallyintimate,anddonorsandsiblingswouldbelesslikelytofeeltheneedtomeetachallenginglyhighnumberofrelatives.Mostclinicsdonotaccuratelytrackbirthsand,withoutsuchtracking,noconsistentlimitscanbeplacedonbirthsperdonor.Atthetimeofwriting,thelargesthalfsiblinggroupontheDSRhoversaround200,andthedonorlistedontheDSRwiththemostoffspringconnectionshas75ofthem(DSR).Theremaybecasesofevenhighernumbers.

GeneticandMedicalTesting

Thirdly,TheEthicalSpermBankwouldcarryoutcomprehensivegenetictestingonbothrecipientsanddonors,andconductmedicalexaminationstoavoid,atallcosts,thecreationofoffspringwithseriousdiseasesorhealthconditions.Manyexistingclinicsclaimtodoso,butnewsstoriesattesttothefactthatthispracticeisneitherthoroughnorcomprehensiveatallclinics.Currently,someclinicstestsomedonorsforsomediseases,apartfromtheFDA'smandatedpracticeofSTDtesting.Parentsshouldknowwhattheyaregettinginto,medicallyspeaking,whentheychooseaspecificdonor.Foraclinicordonortohideaconditionthatthedonormaypassdownisunethicalandpotentiallytragic.

Additionally,spermrecipientsshouldhavecompleteinformationavailableabouttheirowngeneticstomakesuretheyarecompatiblewiththeirdonor'sgenetics,particularlytobesurethattheyarenotbothcarriersofthesameproblematicrecessivegene(s).Knowledgeofinheritedphysiologicaland

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psychologicalpredispositionscanbeasignificantelementinaperson'shealthcare,particularlyinpreventativehealthcare.

Currently,thereislittletonomedicalfollow-upwithdonors,andinformationisrarelysharedandupdatedwithfamilies.Spermbankstendnottohaverecordsonallthefamilieswithchildrenfromaparticulardonor,exacerbatingthesituation.Familiesonlyhaveasnapshotofonedayinthelifeofahealthydonor'sself-reportedmedicalinformation,withnoideaofwhathasoccurredafterthatdate.Becausemanymedicalandgeneticissuesareadult-onsetandthemedicalissuesofadonor'soffspringarerelevanttomultipleparties,theimportanceofestablishingcontactwithadonortoensureafree-flowofupdatedmedicalinformationcannotbeoverstated.Everyfamilythatincludeschildrenfromadonorwithaseriousmedicalconditionneedstobeupdatedwiththisinformationsothattheappropriatemedicalscreeningsandtreatmentsforthechildrencanbesought.

ConcludingThoughts

Atthetimeofwriting,existingspermbanksofferonlyanonymousdonorsorbothanonymousand“open”donors.Thelatterclaimcanbemisleading,sincespermbanksoftenfailtofollow-uponrequestsforcontact,tellfamiliesthatdonorswhowerechosenas“open”arenowanonymous,orclaimtonotbeabletoreachthedonor18yearsafterdonation.Andbanksclaimthatintendedparentscontinuetorequestanonymousdonors,leadingthemtoprovidethatwhichisindemand.Inotherwords,theywanttomakesurebusinessisgoodbymeetingthedesiresoftheirclients.Therefore,theyrefusetodropanonymousdonationasanoffering.Weknowthat,whenintendedparentsareproperlyeducatedandcounseledonthepsychologicalneedofknowingone'sgeneticorigins,theywillnaturallychoosetodowhat'sbestfortheirchild,puttingtheirownfearsaside.

Currently,mostclinicsdonotemphasizethepsychologicalwell-beingoftheirservice'snon-consenting“products.”Thereasonisthat,untilnow,

thefocushasbeenontherightsoftheclinicstosellgametesandprosper,therightofaparenttohaveachild,andtherightofadonortoremainanonymous.Nowisthetimefortheneedsandrightsofdonor-conceivedpeopletonotonlybecomeapartofthisconversation,buttobecomefirstandforemostinthisconversation.Onlytheycanprovideanaccurateunderstandingoftheirownexperiences-nottheconjectureofdetachedmedicalprofessionalsorunknowingparents.TheEthicalSpermBankwouldrequirethischild-centeredfocusofallitsclients.

Thereproductivemedicineindustryhasclaimedthatbanninganonymousdonationwoulddecreasethenumbersofavailablegametedonors.WhilethishasnotbeentrueincountriessuchastheUK,itiscertainlyapossibilityhereintheU.S.WecurrentlydonothaveenoughorgandonorsintheU.S.,butthatdoesnotgiveustherighttoprocuretheseorgansthroughunethicalorillegal(payment)methodologies.Thecasemaybethat,sometimes,inthenameofethics,therejustmightnotbeenoughdonors.Theenddoesnotalwaysjustifythemeans,andanonymousdonationisnotethicallyjustifiableasameansforparentstoformafamilyandforclinicstomakeprofits.

Therewilllikelystillbesomeintendedparentswhowouldrathertakewhatmightappearasthepathofleastresistance,basedontheirownfearsandlackofeducation,andfortheirownconvenienceandcomfort.Butthegrowingculturalmovementtowardopennesswithone'schildren,alongwithadequatecounselingandeducation,willeventuallyplacepressureonsuchparentstodotherightthing.Thesearetheonlysolutionsintheabsenceofgovernmentregulation.Perhapsintimeandaspublicpressuremounts,regulationwillfollow.Eitherway,TheEthicalSpermBankisanideawhosetimehascome.

Co-writtenwithLauraStrong.

ReferencesBrogan,R.(2009).Majorprocessesinidentitydevelopment.Publishedoneducation.com.RetrievedonlineJuly17,2015athttp://www.education.com/reference/article/identity-development/

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FINDING OUR PEOPLE: Wendy and Ryan Kramer’s Story by Ellen Glazer

Oneofthewaysthatwetrytoenrichthelivesofourmembers,aswellastoeducateothersaboutdonorconception,istotellstories.Weofferyouavoiceandbelievethatwhenyoushareyourstoriesofdiscovery,youemboldenothersto“findtheirpeople”andtounderstandtheirownfeelingsaboutdonorconceptioninnewways.Eachfamilystoryisdifferent,buttherearethemesthatrunthroughmanystoriesandinformus.DSRfounders,WendyandRyanKramerhaveastorythatnowspansmorethan2decadesandexpandsallofourunderstandingofdonorconception.Itisastoryofupsanddowns,twistsandturns,determinationandpatience.Itistestimonytothemagnificenceyoumayencounterwhenyouopenyourselftopossibilities.

TheBeginnings…

“Herewegoagain…”Since2000,WendyKramerhasbeenhelpingpeoplewhoseliveshavebeentouchedbydonorconceptionconnectwitheachother.EverydaynewmembersjointheDonorSiblingRegistry(DSR)andmostdays2or3ormorepeopleareconnectedwiththeirown,ortheirchild’sfirst-degreegeneticrelatives.Eachnewconnectionisexcitingandinsomeway,Kramercelebratesalongsidethosewhoarenewlymatched.Butatthebeginningandendoftheday,thisindefatigableheadoftheDSRis“justamom.”“InsomewaysIamnodifferentthananyotherparentontheDSR,signingontoseeifanynewhalfsiblingshavejoined.”

ThehistoryoftheDSR,andWendyandRyanKramer’spersonalhistoryareinextricablylinked.Wendyrecallstheeveningofherowndonorinsemination,lyinginbedquietlyrepeatingthewords“Pickme.Pickme.Pickme.”Twoweekslatershelearnedshewaspregnant.BythetimeRyanwastwoyearsold,itwasclearthathewasexceptionallyintelligent.Bythreehewasasking,“didmydaddie,orwhat?”afternoticingthatotherchildrenathispreschoolhadbothmomsanddads.Byagesixhewasclearhewantedtomeethisgeneticfather.Hadadifferentchildpickedadifferentmom,itisunlikelythattheDSRwouldexist:

theorganizationwasconceivedandgestatedbecauseonecuriouslittleboyaskedquestionsthatonelovinganddeterminedmomcouldnotanswer.Andtherest,astheysay,ishistory.

WendyandRyan’spersonalhistoryofexploration,discoveryandconnectionalongwiththeirexperiencesasthepublicfacesofDSRchroniclemajorshiftsinthepractice,publicperceptionsandprivatejourneysofdonorconception.Theirstory,whichbeganLaborDayweekend1989,withRyan’sconception,waslastupdatedthis2016LaborDayweekendwhenRyan,whowaitedsevenyearsforhisfirstmatchviatheDSR,hadanother.Thefirsttimeitwasasister.Thistimeitisabrother.Therehavebeenothersinbetween.Eachexperienceisnew,differentandcomeswithit’sownbrandofpleasuresandchallenges.

ThehistoryoftheDSRislinear—itisanorganizationthatbegansmall—tinytobeexact.WendypostedasmallnoticeonaYahoogroup,“I’mthemotherofanawesome10yearolddonorchild—Iknowthathehasatleastthreedonorsiblingsandwewouldlovetoconnectwiththem.Wearelookingfordonor1058fromCaliforniaCryobankandhopethatthiswillhelpotherslookingfortheirchildren’sdonors(ortheirown).”Bytheendof2000,therewere6members.Afterayear,therewere14.Bylate2002,membershipnumbered37andasofNovember2016,52,500peoplein105countriesaremembersoftheDSR.Steady,strong,magnificentgrowthinmembershipandalongsideit,influenceinlaws,policyandethicssurroundingarounddonorconception.

TheKramer’sfamilystoryisnotlinear.Yes,Ryanhasgrownfromayoungboyaskingquestionstoa26yearoldproductmanageratGoogleansweringquestions.Yes,Wendyhasevolvedfromamomtryingtohelpherson“findhispeople”toadazzlingleaderofanlargeandinfluentialnon-profit.However,theirfamilystoryofdonorconceptionanddonorconnectionsisoneofmeanderingjourneysinkinship.Alongtheway,therehavebeenconnectionswithRyan’sbiologicalfather,donor,“grandparents,andanarrayofhalfdonor

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siblings.Somematcheshavebeen“easy”(relativelyspeaking)andothers,frustrating.

WearegratefultoWendyandRyanforsharingtheirstoryandhopethatitwillhelpDSRmembersandothersseeandappreciatetheirownstoriesinnewways.Forinthewordsofsociologistanddadthroughdonorconception,JoshuaGamson,“Storieshelpmakethingsmakesense.Theyputthingsinorder.Thisishowithappened.Theyarealsothestufffromwhichidentitiesarebuilt.Creationstories,inparticular,areaboutselfhood.‘Intellingthestoryofourbeginning,asanindividual,anation,apeople,’asthesociologistFrancescaPolettaputsitsimply,‘wedefinewhoweare.’Thisishowithappened.”

ModernFamilies,JoshuaGamson

PICKME,PICKME,PICKME

DonorconceptionhaschangedexponentiallysinceWendyandherthenhusbandchose“DI”whentheylearnedthathewasinfertile.“Over27yearshavepassedbutIcanstillrememberthatAugustdaywhenthedoctortoldus,‘Youwillneverhavechildrentogether.’IfeltlikeI’dbeenkickedinthegut.”Alwaysapersonofactionwhodoesnotknowwhatitmeanstoprocrastinate,Wendypickedherselfup,dustedherselfoffandalongwithherex,movedquicklytothenextstep.“Inthosedayspeopleseekingspermdidn’tgetbabyphotosorquestionnaires,voicerecordingsor‘staffimpressions.’Wemetwithawomanatourlocalclinicwhotookalookatmyhusband’scoloring,height,weightandaskedaboutethnicityasshetriedtomakeamatch.ByLaborDayweekend,Iwasundergoingtwoinseminationshavingnoideaatallaboutthemanwhowouldbethegeneticfatherofmychild.”

WendysaysthatmanypeoplehavegoneontheDSRwebsiteorseenheronTVandhaveassumedthatshewasasinglemotherbychoice.OnlearningthatshewasmarriedwhenRyanwasconceived,theyaskaboutRyan’s“father”.Wendyexplainsthatherex-husbandwasRyan’sdadforRyan’sfirst18monthsbutfromthatpointforward,WendywasRyan’sonlyparent.

“Thismakespeoplereallyuncomfortable,”Wendysays,“Theyunderstandablyworryabouttheideathatanonbiologicalparentcanhavehis/herparentalrightsandresponsibilitiesremoved.”Wendygoesontoexplainthatherex’sexitfromRyan’slifehadnothingtodowithgenetics—theydivorcedbecauseof

substanceabuseissuesandbecauseWendyhadotherworriesaboutRyan’ssafety.Wendy’sgoalwasforRyantogrowupinasafeandhappyenvironmentandlookingback,Wendybelievesthatthiswasherex’sgoalaswell.“IbelievehegaveuphisparentalrightsandresponsibilitiesinpartbecauseheknewitwasbestforRyan.Insodoinghewasabletoleaveourlivesandreturnafewyearslaterasafriend.”

Havinghadhersonwithahusbandandhavingtakingtheextraordinarystepsofendinghisfatherhood,WendysayspreparedhertorespectandrespondtoRyan’sdesiretoknowhisgeneticdad.Thiswasnotalwayshowdonorparentsfeltthough.Sheremindsus,“Inthosedayspeopledidnotaskquestions.Thoseofuswhouseddonorspermhadnoideawehadtherighttobecuriousortherighttosearch.Similarly,donorsassumedtheyhadnorights.”ButbacktoWendyontheexamtablereceivingsperm,originsunknown.

“IjustlaytherelookingupataposterofKevinCostnerontheceilingandmumblingtomyself,‘Pickme.Pickme.Pickme.’IwantedthismorethanIcouldhaveeverimaginedandwithinaweekorso,Iknewthatmypleahadbeenanswered.AnearlypregnancytestwaspositiveandonMay22,1990,Igavebirthtoabeautifulbabyboy.”Wendy,whoisneitherareligiousnoraspiritualperson,feltcertainthatRyanhadpickedher.Andsoshewasnotsurprisedwhenat3,heryoungsonsaidtoher,“Youknow,Ipickedyou.”Sotheretheywere—anexceptionallybrightandcuriousboyandamomwhohadmortgagedherheartforever.

Oneofthefirstthingseveryparentlearnsisthatthechildyougetisnotlikelytobethechildyouanticipated.InWendy’scase,thesurprisesbeganwithRyan’sremarkablemind.Wendyandherthenhusbandhadrequestedadonorthatresembledhimphysically,neveraskingforanythingparticularinregardstoacademicsorintelligence.Wendyjokes,“Iputinforregular,buttheygavemepremium.”AndsoRyan’sexceptionalintelligencecameasacompletesurprise.Bythetimehewasinfirstgrade,testingconfirmedthatRyanwasprofoundlyexceptionallygifted.Alongwiththisnewscamethepsychologist’sprescientobservation,“PeoplelikeRyandon’tusuallyfind‘theirpeople’untiltheyareingraduateschool,havegraduatedfromcollege.”

Wendytookthepsychologist’swordstoheartandearlyonhadaprofoundrespectforwhatsheanticipatedwouldbeRyan’sneedtofind“hispeople.”

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Ryanhadtutorsandmentorsandawonderfulbig“BigBrother”whowasascientist.Thisalsomeantnavigatinganeducationalsystemthatisn’tsetupforachildwhoneedstoaccelerateoraboywhobeginsasafull-timeaerospaceengineeringstudentisacademicallycollegereadyat14.ItalsomeantrespondingtoRyan’sstateddesire,beginningatagesix,tomeethisbiologicalfather.Unabletoofferhimthis,Wendydidwhatshehasnowhadlotsofpracticedoing:shefollowedherson’sleadandtriedtofigureoutasolution.

“Fromthestart,RyanandIwereclearthatwedidn’twanttosearchforsomeone.Insteadwewantedtomakeitpossibleforustobefound.Eventhen,atatimewhenpeopleunderstoodlittleaboutdonorconceptionandtheneedthatsomehavetofindgenetickin,weknewthiswasnottherealmofprivatedetectives.Ithadtobegroundedinmutualconsent.”

Buthowdoessomeonegofromknowingnothingtoknowsomethingandmore?Wendysaysthatherpath—andRyan’s—beganwithhercontactingherclinicwhenRyanwasthreeandaskingiftheycouldtellheranythingatallaboutthedonor.Thewomanwhospokewiththemofferedthisstartlingreply,“Oh,youneverreceivedthelongform?YouweregivenDonor1058fromCaliforniaCryobank.”Withthatsherequestedthatthelongformbemailed,andwhenathickenvelopearrivedafewdayslaterfromCaliforniaCryobank,Wendyletitsitonthecounterforafewhours.“ItwasdauntingtothinkthatitincludedallsortsofinformationaboutRyan’sbiologicalfather—andhence,aboutRyan.”

Whenshedidopenit,Wendyfound,asexpected,thatitcontainedmuchthatwouldbeimportanttoRyan.“Perhapsthemostprofoundexperiencewassimplyseeinghishandwriting.Donor1058wasnolongeravaguehintofaperson—hewasreal!”Wendygoesontosaythatreadingabouthobbiesandinterests,talentsinschoolandphysicalcharacteristicsofthedonorandhisfamilywouldallproveimportanttoRyanovertime.“Itwasn’tlikewecombedtheprofiledailybutwedidlookatitfromtimetotime.Ryanwouldgotoitwhenhehadanewinterestorlearnedsomethingmoreabouthimself.Ithelpedsomuchtobegintoputthepiecestogether.ItwasanimportantpartofRyan’sidentityformation.”Wendyoffers,asanexample,hairandeyecolor.Wendyandherfamilyallhavedarkhair.Ryanwasveryblondasyoungchild,afeaturethatconstantlycalledattentiontothefamily.

“Wheredidhegetthatblondhair?”strangerswoulddeclareinwonder.Wendyremembersshruggingandansweringquitehonestly,“Ihavenoidea!”ReadingtheprofileandlearningthatDonor1058’sbrotherhadblondhairanddarkeyeswasimmenselyhelpful.

Thequestionnaireincludedamessagefromthedonortofutureoffspringthatread“EducatethechildRaisehim/herwithoutbiasesofanykind.Teachhim/hertotrustinothersbuttorelyonself.Instillinhim/herasenseofhumorandtheabilitytoenjoylife.”ToWendyandRyanthisspokevolumes.ItassuredthemthatRyan’sbiologicalfatherwasagoodpersonandthemessagespoketohismaturityandsensitivity.Ryan’sinterestinmeetinghimincreasedandmotherandsonbegantothinkmoreseriouslyabouthowtheymightputthemselvesinapositionofbeingfound.“Wedidn’twanttointrudeuponhimbutwewonderedifhemightfeelaswedid—adesiretomakecontact.WewantedtolethimknowthatRyanexisted,andgivehimtheopportunitytochoosetoconnect.”

OvertheyearsWendyhadcalledCaliforniaCryobankwithsomeregularity.“Iwouldaskthemiftherewereanyupdates,anychangesinpolicies,any-anything.”EventuallyWendywouldhaveacallthathitpaydirtbutinthemeantime,shewonderedifitwouldhelpforRyantowritealetter.“MyfirstgoalwastohelpRyanfeelthathehadsomecontrolofthesituation.Sadly,I’veheardfromsomanyDSRmembersthattheyfeelpowerlessastheirspermbanks,doctors,medicalclinics,andeggdonoragenciesworkveryhardtowithholdsomeofthemostimportantinformationthatadonorchildcandesire.IsuggestedtoRyanthathewritealettertothespermbank.AlthoughIknewtheletterwouldlikelyendupinafileandneverbeshared,itwastheprocessofwritingtheletterandsendingitoffthatIfeltcouldbeempoweringforRyan.”

Howdoyouignorethepoignantletterofaseven-year-oldchild?CaliforniaCryobankdidandtheirnon-responsefurtherprovokedWendyKramer’sire.Sheuppedthevolumeinheryearlycallstothespermbank.Sadly,herpleasonherson’sbehalfyieldedonly,“wepromisedourdonorsanonymityandourobligationistomaintainthis.”“Butwhataboutanobligationtotheresultingchildren?Theyneversignedanyagreements.”Wendywondered.Unnervedandunwillingtoremainpassive,Wendybeganhoningherdetectiveskills.Overtheyearsshehasmasteredthem.

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Wendylooksbackwithamusementatherfirstforayintosearching,whenRyanwasthree,longbeforetheInternet.“AfriendputanadintheLATimesmisc.classifiedsectionthatread,‘Donor1058,wewanttothankyou.’Itincludedourphonenumber.Weplaceditandwewaited.AweeklaterIreceivedacollectphonecallfromtheLACountyjail.Surprised,Iremindedmyselftobeopen-minded.Isaidtomyself,‘Ryan’sdonorisagoodpersonwhomusthavemadeamistake.’IacceptedthecallandsoonrealizedthatthevoiceontheotherendwasanAfricanAmericanman.AlthoughRyansuredidnotlookAfricanAmericanIwentwiththisinformationaswell—ok….soRyan’sgeneticfatherwasAfricanAmericanandisinjail.Ok,Icanbeopen-minded!Itdidn’tmuchmatter—whatmatteredwasthathewascontactingus.Hewantedtobefound.”Asitturnedout,itwasawrongnumber.ThecallerwasrespondingtoanadforaChristopherDarden(attorneyintheOJtrial)look-alikepenpal.

Afewyearslater,WendyobtainedsomestartlingnewsfromaladyatthespermbankandhermotherquicklypasseditontoRyanbeforeshehadtimetofullyprocesshowtotellachildwhowouldimmediatelywantanswers.“Ihadwantedtowaitabit,”Wendysays.“Iknewthathewouldbecomeover-the-moonexcitedbyitandIwantedtohaveaplanbeforetellinghim.”Theinformation,whichWendyhadlearnedsomewhatinadvertently,wasthatRyanhadseveralhalf-siblings“outthere.”TheinformationhadcomefromanatypicallytalkativewomanatCaliforniaCryobank,thatusualfortressofsecrecy.

Asanticipated,Ryanwasfiredupbythenewsthathehadhalfsiblings.“IfIwanttoknowthem,thenmaybetheywanttoknowme?Howcanweknowabouteachotherifthespermbankswon’tputusintouchwithanyone?”Likemanyparentsandtheirchildren,WendyandRyanhadtheirbestconversationsinthecar.“WeusedtobrainstorminourcommutefromNederlandtoBoulder,andback.”Wendyremembers.“WewouldtrytofigureoutwaysthatRyanandhishalfsiblingscouldfindeachother.ThenRyanbeganlearningaboutYahoogroupsandwedecidedtogiveitatry.”Theirfirstmessage,“Iamthemotherofanawesome10yearolddonorchild.Iknowthathehasatleast3donorsiblingsandwouldlovetocontactthem.WearelookingforDonor#1058fromtheCaliforniaCryobank.Ihopethatthisboardwillserveotherslookingfortheirchildren's(ortheirown)siblings.”

AndthatishowtheDonorSiblingRegistrywasborn.Initsearliest,embryonicformitwastheYahoogroup,andthatveryfirstmessagethatWendyandRyanlaunchedonSeptember3,2000.

“TheYahoogrouphelpedgetusstarted,”Wendyremembers.“Buttheprocesswascumbersome—wehadtomakealltheconnectionsourselves.Fortunately,I’dmadecontactwithSheri,acomputersavvymomthroughthegroupandsheofferedtobuildusamatrix.Thatmatrix—whichledtoourwebsite—enabledustobewaymoreefficientandeffective.”AndsotheDSRwebsiteasmostofusknowitwasborn.

Lookingback,Wendyidentifiesherselfprimarilyasamomonamission.ShehadachildwithquestionsandshewasfearlessanddeterminedtodowhatevershecouldtogetRyan’squestionsanswered.ShefeltthatshehadbroughtRyanintothisworldwiththisparticularsetofcircumstances,andshethereforeowedittohimtodowhateverhumanlypossibletohelphimfindtheanswerstothequestionsthathehadaboutthemissingpiecesofthishisidentity.However,somewherealongtheway,Wendyrealizedthatwhatshewasdoingandwhatshewasbuildingwentbeyondherfamilystory.“Inmanyways,IhadnoideawhatIwasdoing.Iwascreatingsomethingoutofnothing.Itwassomethingthathadneverexistedbefore.Itdidnotfitinanyexistingcategory.Puttingonefootinfrontoftheother,Idecidedtotalkwithalawyerandformanon-profitorganization.”

TherehavebeenafewpeoplewhohavebeeninstrumentalinhelpingWendyandRyangrowtheDSR.OnewasaformerdonorintheUKwhosentWendya$1000donationtohelphergettheDSRofftheground.Anotherwasanattorney,awomanwhoprovidedvisionwhenWendyhadnone.Astheytalkedtogether,Wendyremembersthelawyersayingtoher,“Youwillbewritingpapersandtalkingatconferencesandeducatingthepublic.”Wendyremembersglazingoverandthinkingthelawyerwasalittlecrazywhensheheardthesewords—wordsthatfeltsoforeigntoheratthetime.“ThelawyerofferedmevisionwhenIhadnone.”ThelawyeralsoofferedthelegalexpertisethatenabledtheDSRtogainnon-profitstatusin2003,after9monthsofwranglingwiththeIRS.

TodaytheDSRwebsiteisaverylivelyplace.Thereareemailsliterallyflyingaroundtheworld,amongpeoplein105countries.Eachdaymatchesatleast2-3people.Butatthebeginning,thingsmovedveryslowly.WendyandRyan,twopeoplewhothriveonaction,

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hadtowaitpatientlyforthreemonthsaftertheirfirstYahoopostbeforehearingfromanotherdonormom.She,too,wasseekingherdonororherson’shalfsiblings.donorconceptions.TothisWendy,whowasbeginningtolearntowait,replied,“Itmaytakesometime.”

Anditdidtaketime.ThesedayssomepeoplewhosignontotheDSRandhaveaninstantaneousmatch.Butmanywait.ThatsecondmomtosignonwiththeDSRwaitedtwelveyearsbeforeherson’sbiologicalfatherfinallysignedontotheDSR.ForRyan,sevenyearswouldpassbeforehebecamethe2,910thpersontomatchontheDSR.Butthatdoesnotmeanthatintheinterim,hismomembracedpatience.In2002,withonly37membersontheYahoogroup,Wendy“tooktheshowontheroad.”AftersendingemailstoDenver’sthreelocalTVstations,tellingthemaboutRyanandofhisquesttofindhisbiologicalfather,theNBCaffiliatedecidedtorunastory.TwoweeksafterthaalTVstationstoairRyan’ssrory,workedandwithintwot,,DianeSawyerwasinterviewingRyanandWendyonGoodMorningAmericainNewYorkhershow.

OPRAHFINALLYCALLS

Appearancesontheothermajortalkshowsandnewspapersfollowedandwiththem,WendyandRyan’svoiceswereheardacrosstheUSandbeyond.Alongtheway,theyrealizedthattheirquestwasnotonlytofind“Ryan’speople,”butalsotoeducateandsupportallthosewhoselivesweretouchedbydonorconception.“Beforethen,”Wendyremembers,“Peopledidnotknowtheyhadrights.Donoroffspringandparentsdidnotknowtheyhadtherighttobecurious,therighttosearch,ortherighttoconnectwiththeirfirst-degreegeneticrelatives.Additionally,thedonors,whowerepromised(orforcedinto)anonymity,alsohadcuriositiesanddesiredtoknowaboutthechildrenthattheyhadhelpedtocreate.”

Wendysetshersightshighandalthoughproudandtickledtohaveanationalaudience,shewouldoftenquipwithfamily,“Oprahstillhasn’tcalled….”ThewordsmayhavebeensaidhalfinjestbutWendyacknowledgesfullforcedelightwhenherphonerangwiththecallerIDHARPOStudios.Afewweekslatersheanda12-year-oldRyanwereinChicagotapingtheirfirstOprah(Harpospelledbackwards)show.

TheOprahshowwastransformative.OnapersonallevelforWendyandRyan,Oprahwassimplyaffirming.

Shetookthemseriously.SherespectedandadmiredRyan’ssearchandunderstoodhisneedtobeknown.ShetoldRyan,“Ibelieveyouwillfindyourbiologicalfather.”AndOprahwaskindandgraciouswithWendy,takingherbybothhandsandjubilantlygreetingheras“Ryan’sMom,Ryan’sMom,Ryan’sMom.”

Wendy,Ryan,andWendy’smomJackisharedtheexcitementofbeingonOprahalloveragainwhentheshowairedonMay22,2003,Ryan’s13thbirthday.Goingliveatdifferenttimesindifferenttimezones,thefamilyspenthourswatchingtheTVmonitorandrunningbetween2computerscreenswhereflocksofpeoplewerejoiningtheYahoogroup.There,inthemidstoffranticallysigningpeopleon,Wendyreceivedtheemailthatmatteredmorethananyoftheothers.Itwastitled,“Donor1058?”Ryanhadnotidentifiedhisdonor’snumberonOprah.

Havingbeamedhisstoryoutintotheuniverse,Ryanwasoverjoyedtohavesomeonebeamback.Thecontentoftheemailread,“WasthatyourRyanonOprahtoday?”TothisWendyreplied,“Yes!!!”Andthewriterbeamedback,“IguessIknewthatwhenIsawhim.Igavebirthtohistwohalfsisters.Theyare10and7.Likehimtheyarebrilliantandbeautiful….”Wendy,Ryanandhisgrandmaallhugged,laughedandcriedtogether.Ryan’sbirthdaycelebrationwasnowinTechnicolor.Hewasoverthemoonelatedtoknowhehadtwohalfsisters,toseephotosof“twolittlegirlswholookedlikemewithwigs”andperhaps,mostofall,tobeknown.Onhearingofhistwohalfsiblings,herepliedtotheirmother,“Iamscreamingwithjoy.Weareallscreamingwithjoy.Pleasewritebackassoonasishumanlypossible.”AndoffthefamilywenttoRyan’sbirthdaydinner,hisheadhangingoutthecartodeclaretoeveryoneinhishometownworld,“Ihavetwosisters!Ihavetwosisters!”

ThestoryoftheDSRisoneoftwistsandturns,joyfulmomentsandfrustratingsetbacks.AndsoitwastobewithRyanandthisfirstcontact.NosoonerwereRyanandhismomthinkingaboutflyingtotheeastcoasttomeethissisters,thentheirmombeamedbackadevastatingmessage,“Wehavenottoldourdaughtersthattheyweredonorconceivedandwedonotplantodoso….”

HadRyanpickedadifferentmom,itiseasytoimaginethestoryendingthere.Howmuchhurtanddisappointmentandfrustrationwashetotakeandwasthisquestleadinganywheregood?Fortunately,

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Wendy’sunbridledfeistinessandimmeasurablepatiencekeptthemgoing.ThereisnootherwaytosayitthanthatRyanwascrushed.Somuchhadhappenedinsoshortatime.Hehadgainedanationalvoice.Hehadbeenheard.Hehadbeenfound.Hehadtakenagiantleapforwardtowardsfinding“hispeople.”Andnowthisgiganticsetback:thegirlswereouttherebutnotonlycouldn’themeetthem,theycouldnotevenknowthatheexisted.Butasonedoorcloses,anotheropens.Beforemovingontothatnextdoor,abitoffollow-up…

AlthoughRyanhasnotmetthesetwohalfsistersandtheydonotknowabouttheirownbiologicalorigins,orabouthim,heandhismomhavebeenabletolearnmore.TheirmomexchangedmoreemailswithWendyanditwasshewhoprovidedthemwithDonor1058’supdatedprofile,adocumentthatprovedinstrumentalinlatersleuthing.Shealsotoldthemmoreaboutthegirlsandevenprovidedaphoto.PerhapsevenmorehelpfulhasbeenFacebook.WendyandRyanhavebeenabletofollowthegirlsandatleastseeupdatedphotos.

“BUTTHAT’SJUSTANECDOTAL”

Althoughtheiroriginalgoalwastohelppeoplewhoweregeneticallyrelatedmakemutualconsentcontact,WendyandRyandiscoveredearlyonthatotherimportantconnectionswerehappening.Acommunitywasforming.WhentheDSRwebsiteemergedastheplacewherematchesweremade,theYahoogroupbecametheplacethatpeoplewentforconversation,newsandadvice.Informationwasshared.Peopletoldanecdotes.Issueswereraised.Themesemerged.Muchofthiswaswarmandenlightening—participantsaffirmedtheneedtoknoweachother.However,someofwhattheylearnedfromeachotherwastroubling:spermbankswerenotkeepingrecords.Medicalinformationreportedtothemwasbeingignored.Thespermindustrydidnotseemtocareaboutitsconstituents.Troubledandevereagerforchange,WendytookherconcernstotheAmericanSocietyforReproductiveMedicine.“Iexpectedtheywouldbegladtohearfromusandwouldhaveourbackswiththespermbanks.Insteadtheirspokespersonsaidthathedidn’tvaluetheinformationcomingfromtheDSRasthereportswerepurely‘anecdotal’.”

OnedoesnotsaynotoWendyKramer.Inherwords,“IdrivethetrainandwhenIamdrivingthetrain,italwaysleavesthestation.Andontime.”Thatsaid,

Wendywasanaccountant/businessmanagerandrestaurantownerwhodidnotknowhowtoconductformalresearch.EnterDr.SusanGolombok,DirectoroftheCentreforFamilyResearchatCambridgeUniversity,in2006.“DearWendy,”Dr.Golombokbegan,“IwasinterestedtoreadintheUKpapersaboutyourwebsite…..”Conversationsfollowed,WendytravelledtoCambridgeandresearchpartnerscametoWendy’shome.GolombokandhercolleaguesfromCambridgewereonboardandtheresearchtraincouldleavethestation.TheCambridgegroupofferedtheiracademicexpertiseandtheirbeliefinthesignificanceoftheDSRanditswork.Withinashorttime,theCambridgeUniversity—DSRcollaborationwaspublishingresearchthatwasbeingpresentedatconferencesaroundtheworld.Peoplewerelistening.MaybenottheASRM.Surelynotthespermbanksoreggclinics.Butotherswerelisteningandthevoicesofthedonorconceivedwerebeingheard-bothanecdotallyandviapeerreviewedpublishedresearchinprestigiousacademicjournals.

ADOOROPENSENTIRELYUNEXPECTEDLY

2004broughtmajorchangesinRyanandWendy’slives.Ryangraduatedfromhighschoolatage13andsomewhatunexpectedly,soonbecameafulltimeundergraduateintheUniversityofColorado’sAerospaceEngineeringprogram.ItwasalsoayearinwhichcommercialDNAtestingsiteswerejustgettingofftheground.Whenoneofthesesites,FamilyTreeDNAcontactedRyanandaskedifhewouldliketosubmitDNA,hedidacheekswabandsentitoffwithlowexpectations.Hewastoldthatitmightgivehiminsightintosomepaternalinformation,likecountriesoforigin.WendyandRyanwerealwaysupforanotherroute,anothertryandin2004,hesubmittedDNAtoFamilyTreeDNA.Indeed,hesoonlearnedthathispaternalheritagewasmostlyEnglish,someIrish,andeven4%Icelandic,whichhethoughtwasprettycool.Whathecouldnothaveanticipatedwasthatninemonthslateraconnectionwithtwoverydistantrelativeswouldsethimonapathtofindinghisdonor.ThispathbeganwiththefollowingemailfromamannamedMichaelC.

“IampartofaC.familyDNAproject.IwasjustcheckingmyclosestY-chromosomematchesandcameupwithtwopeoplewhowereathree-stepmismatchwithmeonthe37markertest;RobertGeneC.(theonepersonintheprojectthatIknowtobearelative)andRyanKramer.IthencheckedRobertC.'sresultsandhisclosestmatch,atwostepmismatch,wasalso

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RyanKramer.”MichaelC.thengoesintosomegeneticdetailsandcontinues,“Inotherwords,RyanfallsbetweenRobertandmeasifhewerefromathirdbranchofourfamily.WearedescendedfromtwobrothersfromNorthCarolina,AlexanderC.(b.1710)andThomasC.(b.1722)…”

Thingsgotinterestingquickly.MichaelC.wroteon,“Ididawebsearchfor‘RyanKramer’thinkingthatifhewasintogenealogy,hemighthavepostedononeofthemessageboardsorevenhaveawebsitedevotedtohisfamilyhistory.InsteadwhatIfoundwasaDenverPostarticlefromlastNovemberaboutRyanandhissituation.AsecondsearchusingyouremailaddresspostedwithFamilyTreeDNAconfirmeditwasthesameRyanKramer….”

Theplotwasthickening.Ryan,whohadbeenwaitingaspatientlyashecouldforfouryearsontheYahoogroup,wasnowseveralstepsclosertoknowingtheidentityofhisdonor.BecauseFamilyTreeDNAidentifiedlinksviatheYchromosomeandnamesarepasseddowntraditionallyfromfathertoson,Ryan’sdonor’slastnamewaslikelytobeC.orsomevariation.TheironyofallthisdidnotescapeWendyandRyan.TheyhadestablishedtheDSRasaplaceformutualconsentcontact,notwishingtotrackdownor“out”anyonewhowishedtoremainprivate.PriortoWendyandRyan’sgoingliveonGoodMorningAmericaandOprah,fewacknowledgedtherightsofdonoroffspringtoseekgenetickin.Bycontrast,FamilyTreeDNAandcountlessgenealogygroupsfullysupportedthepursuitofone’s“people.”HowfittingthatRyan’smostsignificantleadwouldcomefromadistantgeneticrelativecuriousaboutgenealogy.ThemotherandsonKrameramateurdetectiveagencywasinbusiness.

Lookingback,WendyislightlyamusedbytheunexpectedsupportingcastofcharactersthatweretheretoassistRyaninhissearchforhisdonor.Therewasthe“ladywhoansweredthephone”atthespermbankwholetthemknowthereweremanyoffspring.DianeSawyerhelpedandOprahhelpedmore.Andtherewasthemomwhowouldn’ttellherdaughterstheyaredonorconceivedbutprovidedWendyandRyanwiththesecondarydonorprofilethatcontainedtheexactbirthdateofdonor1058.NowtherewerethetwoC.menbeaminginhelpfromdistantshores.Intheirownway,WendyandRyanhadassembledtheirteamofhelpersbutitwasthismotherandsondetectiveswhowereleadingtheway.

WendyandRyannowhadthreecriticalpiecesofinformationthatwouldleadthem—withoutmuchfurtherdelay—totheirdonor.TheadditionalCaliforniaCryobankdonorprofilepassedalongbythemomofRyan’shalfsistersofferedhisexactbirthdateandplaceofbirthandthankstothegenealogysleuthsonFamilyTreeDNA,theyhadtheleadonalastname.TheyrequestedapubliclistfrominLosAngelesCountyofallmalebirthsonthatparticulardayacoupleofyearsbefore,andhadtuckeditawayinadrawer.Wendyremembersthateeriefeelingofpullingoutthatlistofaround250namesandknowingoneofthembelongedtothemanwhohadgivenherRyan.

Andthereitwas.LanceC.Bornonthatexactdate.ThepiecesfittogetherbutWendy,evertheaccountant,isonewhocoversallbasesbeforereachingconclusions.Shetapedupalargepieceofwhitepaperonthewallanddrewalinedownthemiddle.Ononesideitsaid,“Donor1058”andlistedalltheyknewabouthimfromthedonorprofile.Ontheotherside,“LanceC.”andalltheywerelearningabouthim.Everythingthatmatchedonbothsidesofthemiddleline,wouldbehighlightedinbrightyellow.

WendyandRyanknewwhatengineeringdegreesLancehadandapproximatelywhenhehadearnedthem.Andtheyhadresearchedaboutpossiblecollegesoruniversitiesheattendedbasedonareasofstudyandgeography.Ryancalledthethreeorfourinstitutionsthatwerelikelymatchesandtoldhisstory,askingifanyonenamedLanceC.hadearnedadegreetherewithinalikelythree-yearperiod.Bingo—thenameandtheyearandthedegreematchedup.LancehadearnedhisMastersofEngineeringin1990.Thisnewstransformedthewhitepapertoablazeofyellow.Buttherewastoberemarkableicingonthisricherandrichercake:Lance’sdegreewasdatedMay22,1990,theverydaythatRyanwasborn.

Sotheretheyhadit.Ryan’sdonorhadgonefromadistantblurtoapersonintheformofDonor1058toreal,liveLanceC.,livinginSanFranciscoandworkingforGoogle(hewould,ofcourse,beamusedwhenhelateraskedRyanhowhehadfoundhimandRyan’sonewordsheepishreplywas“Google.”).Ryanbecamethefirstdonor-conceivedpersontolocateaformerlyanonymousspermdonorviaDNAtesting.Butwhattodonext?

Wendyisboldbutsheisalsocautious.Hadthingsbeenlefttoher,shewouldhaveletLance’sidentity

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marinateinhermindandinRyan’sforafewdaysormoreandthenthey’dfigureoutwhattodonext.ButRyanwasa15-year-oldteenwhohadjustcompletedmissionimpossible.Forhim,therewasnowaiting.HewokeWendyupinthemiddleofthenighttoletherknowhehadwrittenalettertoLanceandhe’dalreadypushed“Send.”Wendyremembersthinking,“Somuchforcollaboration!”

Wendyremembersreactingwithfear.Shehadseenhersongofromtheecstasyoflearninghehadtwosisterstothecrushingnewsthattheymightneverknowhim.MorehurtcouldsurelyfollowwithLance.WendyworriedthatRyan,brightasheisandwisebeyondyears,mighthaveputLanceoffbyhisletter.ShewasrelievedandquiteproudwhenshereadRyan’sletterandfeltsomewhathopefulthatitwouldbewellreceived.“Iwantedonething,”Wendyrecalls,“IwantedLancetobekind.”For48hourshermantrawas,“pleasebekind,pleasebekind,pleasebekind.”TwonightslaterRyanawakenedherasecondtimetojubilantlyannounce,“hewrotemeback!”Wendyknewtheanswertoherquestionwhenshesawherson’ssmilemixedwithtearsbutstillaskedthequestion.“Washekind?”Theanswerwasaresounding“YES!”

RyanhassharedhislettertoLance,afewexcerptsfromLance’sreplyandhissecondlettertoLance.

On6/14/05,RyanKramerwrote:

Lance,

Wheretobegin...mynameisRyanKramer,I'm15yearsoldandIliveinNederland,ColoradoIjustcompletedmyfirstyearattheUniversityofColorado,majoringinAerospaceEngineering.Recently,mymotherWendyandIhavebeendoingsomeresearchtryingtocompletemyfamilytree.Asyouunderstandinamoment,Ihavebeenmissingalargechunkofmyancestry.Aftermuchwork,DNAtests,privateinvestigationandpublicrecordsearching,IbelievethatIhavefinallyfoundthemanI’mlookingfor.Youmaywanttositdownforthenextpart.

15yearsagomymotherwasimpregnatedwithaspermdonationfromCaliforniaCryobankDonor1058.Accordingtothebriefamountofinformationwehaveabouthim,hewasborn****,1967,is6feettall,haslightbrownhairandbrowneyes.HeholdsaBSinindustrialengineeringandanMSinEngineeringManagement.Hisfatherisanurban

plannerandhisbrotherisapilot.HelikespoetryandhisfavoriteplacetoeatistheInandOutBurger.Youandthisman,Ibelieve,areoneinthesame,whichincidentally,makesyou,myfather.

Now,beforeyoujumptoanyconclusions,I'dliketoreassureyouofafewthings.1stofall,Iamnotcontactingyouformoney,Iamnotlookingforyoutoputmethroughcollege,nordoIseekanyotherformoffinancialaid.Secondly,Irespectthefactthatwhenyoudonatedasateenager,yousignedupforcompleteanonymity.Thus,Iamnotaskingforarelationship,noramIaskingyoutobecomeafatherfigureorapartofmylifeifyouarenotcomfortablewithit.Whilegettingtoknowyouwouldbethebestcasescenarioforme,thelevelonwhichweconnectisentirelyuptoyou.

BecauseIadvanced4gradesandwenttocollegeearly,TheDenverPostdidaratherlargearticleaboutthispastNovember.Itcontainsalmosteverythingyoucouldeverwanttoknowaboutme,soIamattachingthelink:

http://www.denverpost.com/boywonder/ci_0002556220/ci_0002556220.

Whenyouareready,youmaycontactmebywhatevermeansyoufeelmostappropriate.Tostartwith,Iwouldliketohearabitmoreaboutyou.Whatareyourhobbies?Interests?Areyoumarried?Wheredoyouwork,andwhatdoyoudo?Wheredidyougotoschool?Growup?SinceIstartedaskingaboutyouattheageof2,Ihavealwaysbeencuriousaboutyou.AnythingyouarecomfortabletellingmeaboutyourselfwouldbemorethanIknownow.

Withthat,Ileavetheballinyourcourt.Ilookforwardtohearingfromyou,andhopeyouarewell.

Sincerely,

RyanKramer

ExcerptsfromLance’sreply:

DearRyan,

I'mverypleasedtohearfromyou.

Mygreathopeisthatyouwilluseyourgiftsfortheserviceofmankind,solvingtheproblemsthatthreatenthesurvivalofthehumanraceinthelongrun,orbuildingtoolsthatwillenableotherstosolvetheseproblems.“Withgreatpowercomesgreat

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responsibility,”astheysaidinSpiderman.MoreoverIhopeyouwillworktoenableustobemoreintelligentasarace.

Ihopeyou'llcultivatealoveforreading,especiallyaboutleadership:theworldneedssmartleaders.

Youlookalittlelikemeatyourageinyourpicture.

IhaveanaboveaverageIQ,butsodoesvirtuallyeveryoneIworkwith–smartsarehelpful,butmethodologyandpeopleskillsarealsovitalinlife.

Idon'twantANYpublicityforbeingasperm-donorfatherrightnow,butIamthrilledtobeyourgeneticfather.

I'mhappytoexchangeemailswithyoufornow,butwewillhavetobuildanyrelationshipslowly.

Bestregards,

Lance

Ryanresponded….

Lance,

Iamverypleasedtohearfromyouaswell.Youemailwasveryinspiring,andyouseemlikeaverygoodperson,thekindIwouldgetalongwith.Idon'tknowifyourememberthisornot,butontheprofileyoufilledoutwhenyouwere19,yousaid“Educatethechild,raisehimorherwithoutanybiasofanykind.Teachhimorhertotrustinothers,buttorelyonself.Instillinhimorherasenseofhumor,andtheabilitytoenjoylife.”Iwasblownawaybyyourintelligenceandinsightfulnessatsuchayoungage.Itwasoneofthefewthingsonthatprofilethatwaspersonal,notjustaphysicalcharacteristic.Ialwaystookittoheartanduseditasagoldenruleforlife.

1stofall,thankyouforansweringmyquestions,IcouldnothelpsmilingasIreadyourresponses.Wesharealotincommon,anditisnosurprise.Ioftenseethingsinmyselfthatclearlydidnotcomefromthematernalsideofmyfamily,andwonderabouttheirorigins.ThingsI'minterestedin,physicaltraits,waysImoveorspeak,foodsIlikeor(moreoften)don'tlike,andmuchmore.Learningmoreaboutyouwillbeanenlighteningexperienceforme,nodoubt.

Inregardstoyourquestions,collegewentverywelllastsemester.My1stsemester(fall2004)wasactuallyquiteshaky.ItookGeneralChemistry,Calculus1,andIntroductiontoAerospace

Engineering.IgotanF,C,andArespectively.Thetruthis,collegewasakickintheteethat1st.Ihadbecomesoaccustomedtobeingboredinhighschool,whenIstartedcollege,Ihadaratherlargerudeawakening.Chemistry(whichisnotmyfavoritesubject,tosaytheleast)wasthemostdifficultforme.Calculuswasveryfunandveryeasytounderstand,butduetoafewstupidmistakesonexams,IendedupwithaC.IntrotoAerospace,however,wasveryeasyandenjoyable.Secondsemesterwasaloteasier.ItookChemistryagain,andjustfortheGPA,Itookcalculus1againaswell.IalsoaddedanEngineeringProjectsclass.Thistimearound,IlandedA'sandB's.

Myprojectsclassprovedtobequiteenjoyable.Iwastheleaderofateamof5,andwehadthesemestertodesignandbuilda“sustainabledevelopmentproject”.Myteambuiltahydrogencollectionandstoragesystem,usingelectrolysis.

Thissummer,Iplantorelaxandridemymountainbike.InMay,mymotherandIspenttwoweeksinTurkey,whichwasveryfun.WespentsometimeinIstanbul,thenafewdaysontheMediterraneancoast,aswellasa5-dayboatride.WehavetraditionallygonetoEuropeeveryyearsinceIwas8withtheexceptionoflastyear.Travelinghas

beenperhapsthegreatestlearningexperienceofmylife.I'velearnedsomuchabouthistoryandculture,muchmorethanIcouldeverfindinatextbook.Iamgratefultoherforprovidingmewiththatopportunity.

Forthisfallsemester,IamregisteredforCalculus2,Physics1,IntroductiontotheHumanities,IntroductiontoCivilEngineering,anda1-creditworkgroup.IhavebeensetonAerospaceformanyyearsnow,butrecentlyhavedevelopedaninterestinCivil.IamtakingtheintrotoseeifitsreallywhatIwanttopursueadegreeinornot.Iamalsolookingforwardtophysics,asitwasoneofmyfavoritesubjectsinhighschool.

Finally,Ihaveafewmorequestionsforyou,ifyoudon'tmindansweringthem.Forstarters,whatkindofmusicdoyoulike?Musicisalargepartofmylife,andmyiPodisusuallyrunningatleastafewhoursaday.Irecallyoulikingmodernrockonyourprofile.I'maclassicrockkindaguy…LedZeppelinorBobDylanwouldbemyfavorites.Howaboutmovies?IlikeTheThing,TheShawshankRedemption,the

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originalStarWarsandTheShining.YousaidthatKeyboardwastobea“futurehobby”ofyours.Didyoueverpickitup?IbeganplayingkeyboardwhenIwas5,andplayeduntilIwasten.Ithenstudiedviolinforayear,andthencelloforafewyears.Irecentlyboughtanelectricguitarandhavebeenlearningafewthingsonithereandthere,butamlookingforwardtolearningthebassaswell.YoualsomentionedplayingultimateFrisbee.Doyouplayonanysortofateam,orjustforfun?Iaskbecauseitoneofmyfavoritesports.Anyway,IhopeIdidn'toverloadyouwithquestions.Remember,youdon'thavetotellmeanythingyournotcomfortablewith.

Also,IwouldliketoassurethatthatIcompletelyrespectyourrequestfornopublicity.Iunderstandcompletely,andIwillmakesurenottomentionanyofthistoanyoneotherthanclosefriendsandfamily.Yourrequestsaremytoppriority.

Anyway,thepictureintheDenverPostwaskindofsmall,soifyou'reinterestedinseeingalargerpictureofme,Ihaveattachedone.Itisofmehikingwalkinginariverinturkey.Anyway,I'dbettergo,butthankyouagainforyourresponse,andIlookforwardtohearingfromyou.

Ryan

P.S.Iwashappytoseethatyoumentionedspider-maninyourmessage:).

RyanandLancecommunicatedbyemailoverthesummermonthsfollowingtheirinitialexchangebutthelengthandfrequencyofmessagesdiminishedduringthattime.ButRyanwasbuoyedbyallthepositivesthathadhappened—hehadfoundLanceandconfirmedthatLanceisagoodperson.Lancewaskindtowardshim,andRyannowhadacompletemedicalhistory.Hewasjubilantalsotohavefreedhimselffromthecontrolofthespermbank.Soallwasmostlygood.Ryanremindedhimselfthatevenifcontactpeteredout,“whenIturn18Icangetonaplaneandgoshakehishand.”

Asitturnedout,Ryanwouldnotbewaitinguntilage18foravisitwithLance.InAugust,asurpriseemailarrived.Init,Lancewrotethefollowing,“WouldyouliketocometoCaliforniatomeetmeandyourgrandparents?”Thisunexpectedinvitation,withit’scleardeclarationthatRyanandLance’sparentsarekin,sentRyanandhismomover-the-moonwithexcitement.Theirstateofwonderincreased

exponentiallywhenLancesentdetailed,yetMissionImpossible-typeinstructionsfortheirtravels.DeterminedtokeepOprahoutofthepicture,Lancewassendingthemtoaspecificairport,withcontinuedinstructionstorentacarandcheckinataspecifichoteltoawaitfurtherinstructions.WendyandRyan,veteransofsome“ourlivesfeellikeamovie”momentswhentheywentonnationalTV,surelyfeltthisallthemoreastheydutifullyfollowedLance’sinstructions.

“Checkitout.Seethatkid?He’smyson.”

WendyrememberscascadingfeelingsofgratitudewhentheyarrivedintheirhotelroomandweregreetedbyabasketoftreatsandasweetnotefromLance’smom.Aretiredteacherandartprofessor,sheprovidedthemwithaneducator’swelcome—therewasadviceonwheretogoandwhattodoandjusttherightmixof“munchies”forateenageboyandhismom.Shealsoincludedherphonenumber.LaterthateveningWendycalledthenumber.Thetwowomenspokeforaboutanhour,withWendytakingdetailednotesforRyantoreadwhilehe(literally)bouncedaroundtheroom.Thefollowingafternoon,afteravisittothemuseumthatLance’smomhadsuggested,andwhilewaitinginlineatBananaRepublic,anothercallcame.CallerIDdeclaredthisonewasfromLance.

“Youanswerit.”“Noyou!”“Noyougetit.”“NoYOU!”WendyandRyanendedthiscomicalrapid-firephonevolleywithWendytakingthephoneandhearingLance’svoicefortheveryfirsttime.Hegaveinstructionstomeetinonehourinthelobbyofthehotel.WendyandRyanracedbacktothehoteltochangeandthenmovedrapidlyintomeeting-our-donor-for-the-first-timerehearsalmode.Ryanagainwas(literally)bouncingoffthewallsastheypreparedforthemeeting-jumpingfromonebedtotheotheranddoingflipsinover-the-topemotionalandphysicalexuberance.

“Wedecidedwe’dtimeitperfectlysothatwewouldexittheelevatorandcasuallystrollintothelobby.Thereisonlyonechancetomakeafirstimpressionandwewereonit.Wewantedthatfirstimpressiontogowell.Wewantedtolookalotmorenonchalantthanwewereactuallyfeeling.Sowerehearsed-wetooktheelevatordown,foundnoLance,tooktheelevatorupandrepeatedthisdrillseveraltimes.IwantedtoinstillsomehumorintoapotentiallystressfulscenarioforRyan,sothecomedyroutinereallyhelped.Ultimately,weoptedforperching

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ourselvesbehindtheadjoiningbar,gigglingallthewhile,andmakingour‘casual’entrancefromthatdirection.”Andthenithappened.

Youngmenwalkedinandoutofthehotellobbybutwhenhearrived,therewasnomistakingLance.HewastallandphysicallysimilartoRyanbuttherealgiveawaywashissmile.AshecamecloserWendynoticed,“hehasRyan’steeth!”andthen,“hehasRyan’seyebrows!”Andtheretheyweremomentslater;Wendyisshakingthehandofthemanwho“isjustasmuchrelatedtoRyanasIam.”Itwashumblingforhertobewith“theotherhalfofRyan’sDNA”andutterlymagnificenttobeabletowatchherson’sdreamcometrue.

Mom,sonanddonordadproceededtoarestaurantwhereRyanandLancepromptlyraisedtheirhandstotoucheachothertocompare,thentheirfeet.Wendyobserves,“Iguessitisa‘guything.’Thiswashowtheyfirstconnected.”She,meanwhile,wasfascinatedtoseehowsimilartheirwalkswereandastheystrolledtotherestaurant,Wendystayingbehindafewfeet,amusedathowotherwomenwerewatchingLance.

Sowhatdoesateenager,whohasbeensearchingforyears,saytothismanhehasfinallyfoundandwhatdoesaman,whoneversoughttobefound,saytohisnewlydiscoveredbiologicalson?Theirswas,notsurprisingly,simpleconversation.LanceaskedRyanaboutschool.Theyaskedeachotheraboutinterests,tastes,preferencesinmusic,food,etc.ThethreetalkedformorethananhourandthenLanceofferedupanotherunexpectedinvitation:tohisparent’shomefordinner.

DinnerwithRyan’sbiologicalgrandparents,likelunchwithLance,wentverywell.Wendyrecallsbothvisitsbeginningprimarilywithnervousness,giddinessandlightconversation—peoplesimplygettingtoknoweachother.Yes,therewasnomistakingthatLancehadidentifiedhisparentsasRyan’sgrandparentsbutatthisinitialvisit,therewasnodefiningorcategorizingofrelationships.Thiswassimplyatimeofgettingtoknow—andlike--eachother.InthefirstfewminutesWendygentlyandwithhumoracknowledgedthenervousnessfeltbyall,asLance’sdadquicklyofferedupaglassofwine.

Astheeveningunfolded,everyonebecamemorerelaxedandwhenthedoorbellrangtherewasevenamomentoflevitywhenLancequipped,“ThatbetternotbeOprah.”Infact,itwasthepizzadeliveryguy.

Althoughthingsgoteasierandmorerelaxedoverthecourseofthatfirstvisit,Wendysaysthatitwouldbealongtimebeforeshewouldseehersonrelaxandtrulybehimselfwithhisnewlyfoundgeneticfamily.“Foronething,thestakeswerehigh.Theycouldnothavebeenhigher.Ryanneededandwantedthemtolikehim.Foranother,weareverydifferentpeople.RyanandIandourfamilyareallexpressive,exuberantpeoplewhoarenottheleastbitreluctanttoshowourfeelings.Lanceandhisparentstendtobemorereserved.Atonepoint,yearslater,Ryan’sdonorgrandmothersaidtome,‘we’rejustnotveryfunnypeople.’”WhichWendyactuallythoughtkindoffunny.

ThefinalmorningofthatweekendvisitwasbreakfastagainatLance’sparent’shome.“IrememberthesmellofcookingFrenchtoast,watchingRyanandhisgrandfathersittingatthepiano,grandfatherplayingabeautifultune,withLancelookingon.”Wendyaddsthatitwasallwithasenseofunrealityanddisbeliefandsheerwonder.Thiswasafamilygatheringtogether.Thiswasallsonaturalandyetsowildlyunexpected.“TheicingonthecakeorthecinnamonontheFrenchtoastcamewhenLance’smomprancedintotheroomwearinganapron,spatulainhandandbegansinging.I’mnotsurehow—orif—Iheldbacktearsatthispoint.IwaswitnesstoRyan’smostferventdreams—andthensome—comingtrue.”

Morethanelevenyearshavepassedsincethisinitialmeetingandbynow,Lance’sparentsandRyanhavelongsinceestablishedagrandparent-grandsonrelationship.Howdidthisunfold?ItadvancedwhentheyallcametoColoradoforseveralvacations,includingforRyan’sgraduationandcelebratedwiththeKramerfamilyoverthecourseofafewdays.AnditwassurelycatapultedalongbyRyan’sdecisiontoattendgraduateschoolatUSC(obtainingthesameengineeringmaster’sdegreeasLance),averyshortdistancefromthegrandparent’shome.Itwasfurtheredalsobyhisdecisiontorentaplaceonlyabikerideawayfromthemandbytheirgraciouswelcomeandoffersofdelicioushomecookedmeals.AndRyan’sgraciousresponsetohisgrandfather’squestionsabouthisprinterhelpedalot.NolongerwasRyanwalkingoneggshells.Theywerealloffgoodbehavior.ThemanwhosomewhatreluctantlyintroducedhimselftoRyan’slandlordashisgrandfather,wasincreasinglycomfortablepepperinghisgrandsonwithcomputerandprinterquestionsandofferingvaluablegrandfatherlyadvice.

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RyanremainedinPasadena,livingnearhisdonorgrandparentsfor18months,finishinghismaster’sinengineeringandthenontoajobattheJetPropulsionLaboratory.Longsincesecureinhisrelationshipwithhisgrandparentsandtheywithhim.Meanwhile,WendyhadgrownclosewithRyan’snewgrandmotherandthatrelationshiphasflourishedovertheyears.“Oursisarelationshipthatcannotbedefinedbywords,”Wendysays.Shegoeson“itcannotbesaidtobe‘likeadaughter-in-laworlikeasister-inlaw.’Sheisthegrandmothertomychild,andIamthemotherofhergrandchild.It’saunique,standalone,oneofakindspecialbond.”

Ryan’srelationshipwithLancewasalsohelpedalongbygeographyandbymutualeffort.RyanmovedtoSanFranciscoin2014foranewjob,makingiteasierforhimtogettogetherwithLance“asfriends.”In2016RyantookajobatGoogle’sLifeSciencesdivisioncalledVerily.Thesedaysthetwomenmightmeetafterworkatabar,asSanFranciscansdoandtherearetimeswhenLanceincludesRyaninapartyorgatheringheathishouse.WendyhasonoccasionbeenpartofthesevisitsandonebaroutinginJanuary2015asastandoutevent.

“IwasintownvisitingRyanandLancesuggestedweallmeetforahappyhourpartyatabarindowntownSanFrancisco.WearrivedtoapackedhousebutspottedLanceatadistance.RyanandIbegansnakingourwaythroughthecrowdandaswegotclose,IheardLancesaytoafewguysaroundhim,‘Checkitout.Seethatkid?He’smyson.’”WendyrealizedthenhowmuchshehadlongedforLancetobeproudofRyanandthereitwas,loud,clear,determinedconfirmationofthatpride.“Checkitout.Seethatkid?He’smyson.”Wordsthatthismother,whohaddoneitall,hadwaited24yearstohear.

Itgotbetter.LancecontinuedandexpandedhispraiseofRyanandseemedtoabsolutelydelightinpeoples’responsestoRyanincluding,“Youguyslookalike.Areyoutwobrothers?”

AndasmuchasLancerelishedbraggingaboutRyan,hedidnot,foramoment,attempttotakeanycreditfromWendy.OnlytoohappytogivecreditwherecreditwassurelydueLancetoldallthatwouldlisten,“Shegetsallthecredit.Sheraisedhim.SheisRyan’smom.”

SiblingConnections—FoundandNotFoundonOprahand60MinutesandtheDSR

AlthoughfindinghisdonorwasRyan’soriginalgoalandremainedcentral,theDonorSiblingRegistry’snamespeakstothesignificancethatsiblingconnectionstookonalongtheway.Asofthiswriting,RyanandWendyareawareofsevenhalfsiblings.TheseincludethetwogirlswhosemomcontactedtheKramer’swiththeemailheading1058andincludeonehalf-brotherwhomtheylearnedaboutonlyrecently.However,itwastheconnectionsmadewithfouryoungwomenbetween2005and2008thathavealsobeenimportantinRyan’sexperienceof“findingmypeople.”

FirstcameTiffanyin2005.Sheis6monthsyoungerthanRyanandborntoasinglemotherwholatermarried.Intellinghershewasdonorconceived,Tiffany’smomadmonishedherfromeversearching.Butasabrightandcuriousteen,TiffanysearchedonherownandfoundRyan.Shecontactedhimandaflurryofexcitedemailsfollowedbetweenthetwohalf-sibs.Ryanwasjubilant,asuntilthispoint,theonlysiblingshehad“found”didnotevenknowtheyweredonorconceived.Wendy,however,wascautious.ShetoldTiffanythattheywouldhavetobringhermomintotheloop.

Timingcanbeeverythingandforatime,itseemedthattimingofferedTiffanyanidealwayoftellinghermom.Thepreviousfall,WendyandRyanhadbeencontactedby60MinutesandthetapeoftheirshowwasgoingtobeairedinMarch2006.TiffanytoldtheKramersthatshewouldwatchtheshowwithhermomandthatwhenRyancameon,shewouldsay,“thatboy—heismybrother.”Onboardwiththisplan,WendysentTiffanyanoteforhermom,explainingwhotheywere,andhowthisconnectionbetweenthetwokidscouldbeapositiveexperienceforall.SheandRyanwatched60Minuteswithmultifacetedexcitement—theywerethrilledtohaveyetanothernationalandrespectedvoiceandtheywereequallyeagertogetTiffany’scall.

First,thegoodnews.The60Minutesshowwasahugesuccess.Itbrought28,000visitorstotheDSRinMarch,upfromtheusual8,000.Andmoreimportant,inatypicalmonththereare30-50matches.InMarchof2006538peoplematched.AnotherbigtriumphforRyanwasthathewasabletosuccessfullynavigatesomedelicateterritoryofprivacyandsecrecy.Lancehadmadeitveryclearthathewouldcutoffcontactif

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Ryanacknowledgedhehadfoundhimbutawarethat60Minuteswouldhavetoaskthedonorquestion,Ryancameupwiththefollowingresponsetothe“didyoufindyourdonor?”question.“IprefernottotalkaboutmypersonalsituationwithmydonorbecauseitcouldcompromiseanyfuturecontactImighthavewithhim.”CorrespondentSteveKroftagreedthatthisanswerwasacceptable.

Nowthetoughnews…thecallfromTiffanynevercame.Astheywaitedforthephonetoring,WendyandRyancametorealizethatsomethingmusthavegonewrong.Indeed,Tiffany’ssweetandinnocenteffortstosharehergoodnewswithhermomfellonharshears.Hermotherdeclared,“Thosepeoplearenotyourfamily”andwiththat,tookTiffany’sphoneandshutdownherMySpaceaccount.AfewmonthslaterTiffanysentWendyalovelyMother’sDaycardaccompaniedbyasensitivenote.TherewereafewadditionalcommunicationsbutTiffanyeventuallystoppedallcontact.

Ryanhasalwaysfeltdifferent—hewasexceptionallyintelligentanddonorconceived—andhelongedtoconnectwithotherslikehim.“Likehim”couldbethroughgeneticconnectionsbuttheirexperienceontheDSRremindedbothWendyandRyanthatthiswasnotallaboutgeneticconnections:simplymeetingotherswhowerebroughtintothisworldthroughanonymousdonationwouldbehelpful.Anditwaswiththisknowledgeofwhatitmeantto“findhispeople”thatRyanbecameanhonorarymemberofDonor66’soffspringgroup.Ithappenedsomethinglikethis…WendyreceivedacallfromamomwhohadtwochildrenthroughDonor66.ShehadconnectedwithamomwhosetwingirlsalsocamefromDonor66.ShewascallingtosayhowgratefulshewastotheDSRandtoaskadviceaboutthefamily’sfirstmeeting.Andthencamealongtwoothermomsandtwomorekids.SixDonor66offspringandRyan.FourDonor66momsandWendy.TheyalllivedintheDenverareaandtheyenjoyedspendingtimetogether.ThepiecesofRyan’scomplexidentitypuzzlewerebeginningtofittogether.Itwasmeaningfulforhimtobewithotherswhohadthedonoroffspringexperienceregardlessofwhotheirdonorswere.Andhecontinuedtoseekgeneticconnections.Hewouldfindhispeopleinbothgroups.

GettingtogetherwiththeDonor66groupwasbeeneasyforRyanandWendyastheyliveintheDenverarea.Theygottogetheronafairlyregularbasis

enjoyingbarbecues,mediaevents,holidaycelebrationsandinsomeinstances,strongfriendships.Althoughnotconnectedgenetically,forRyantheDonor66teensandyoungadultsareverymuchhispeople.

February2007:Ryanbecomesthe2,910thpersontobematchedontheDSR.EnterAnna.

Wendywasatworkwhenthematchcameonhercomputerscreen.Herinitialsurpriseanddelightwassooncloudedbyfear.SeeingthatAnna,whowasbornthreeyearstothedayofRyan,wasonly13,WendyfearedthattheywouldhaveyetanotherTiffanysituation.ShewasrelievedtoquicklylearnthatAnna’sparentswereonboard,somuchsothatithadbeenwithherdadthatshesignedontotheDSR.

Anna’smom’sinitialemail:

DearWendy,

Mydaughter,Annajustrespondedtoapostingbyyouregardingdonornumber1058.Thisisthefirsttimewehaveexploredtheregistryandareveryanxioustofindoutifyoursonisindeedamatch.

MyhusbandandIallowedAnnatoregisterherselflastnight,withoursupervision.Sheis13yearsold,andwasbornonMay22nd,1993.OurdonorwasanEngineeringstudent.Hewasbornin1967.Hehasonebrotherwhoisapilot.Doesanyofthissoundfamiliartoyou?

Asyoucanimagine,wearelookingforwardtoaresponseandhopetohearfromyousoon.'

Regards,

AnnMarie(Anna'sMom)

Robert(Anna'sDad)

“WhenIreadthisIwasgiddy.Andinshock.AnnMarieandIspokebyphoneandduringourcall,Itoldherthateventhoughwe’reessentiallystrangers,thatwesharedsomethingsoprecious.Wequicklysharedalittleabouteachofourkids,andAnnaaskedtospeakwithmesothatshecouldaskquestionsabouttheotherhalfsiblingsthatweknewabout.”

LaterthateveningRyanandAnnaconnectedonlineviainstantmessaging.OverthenextfewweeksAnnMarieandWendyhadseveralphonecallsandeventuallytheyallhadagroupphonecall.TheytalkedaboutmeetingandallwantedthattohappenASAP.

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ABC'sPrimetimehadexpressedinterestinupdatingastorythattheyhaddonemorethanfouryearsagoonRyanandthebeginningsoftheDSR,andtheythoughtthatRyanandAnna'smeetingwouldbeaperfectupdate.

Amonthlater,WendyandRyanflewtoNYCandalmostinfrontoflivecameras(thecamerafolkswerethankfullyabitofftrack),AnnaandRyanmetinCentralPark.Wendyremembersitasifwasyesterday,“Wewereallextremelyexcited.RyanboughtAnnaaUniversityofColoradosweatshirt.ThemorningofthemeetingeachfamilyhadacameracrewtowalkwithtowardseachotherinCentralPark.Theyhadsetameetingplace,butbecauseofdisorganization,ourtwofamiliesbasicallybumpedintoeachotherwalkingalongtheparkroad.Itwastremendous.Weallhugged,andthesmilesonAnna'sandRyan'sfacesweretelling.Therewasanundeniablebondandrecognitionofthefamiliarinoneanother.Theparentswerescouringthefacesofthekids,lookingforsimilarities.Itwasveryemotionalforus,andamazingtomeetthisyounggirlwhohadbitsandpiecesofmysoninher.IwasoverwhelmedwithgratitudeforAnna'sparentsthattheyhadbeenhonestwithAnnaandhonoredhercuriosityandneedtosearchforandconnectwithRyan.WhileAnna'smomandIhadamoreobviousbond,IfeltextremegratitudeforAnna'sdad.IwassoimpressedthathehadputanypossiblefearsorconcernsaboutAnnafindingbiologicalfamilytotheside,insteadhonoringhisdaughter'sneedstoconnecttothatinvisibleandunknownpartofherself.

“Wespendthefirsthourorsoaskingeachotherquestions,takingpicturesandcomparingnotes.RyanandAnna'ssmilesseemedpermanentlyadheredtotheirfaces.Therewasasenseofpeaceaboutthebothofthem.

“Wespentthenext48hoursgettingtoknoweachotherandmarvelingatthesimilarities(anddifferences)inRyanandAnna.Itwascleartous,thateventhoughwehadjustmet,thatwewereconnectingasfamily.Strangetobegettingtoknowfamilyforthefirsttime.Wewerelayingthegroundworkforaconnectionthatcouldlasttheirlifetimes.WemadeitclearthatRyanandAnnawouldbedefiningtherelationshipandthattherewasnopressureforittolookanycertainway.Wealsomadesurethekidsknewthattheirrelationshipat13and16wouldcertainlychangeanddevelopastheyyearswenton.Fornow,theparentswouldmostlikelymakethelogistical

planning,butthiswouldonlybebasedonthedesiresofbothAnnaandRyan.AnnaworeherCUsweatshirtwithpride,despitethe75degreeweather.”

ThetwofamiliessharedalovelyweekendandRyanfinallyhadhislongawaitedhalfsibling.AyearlatertheygottogetherasecondtimecelebratingRyan’s18thbirthdayandAnna’s15th.TheywouldbetogetheragainforRyan’scollegegraduationwhereAnnaandherparentswouldgettomeetLanceandhisparents.AlthoughLancehadearlieron“banned”photos,WendyishappytoreportthatshehasanynumberofphotosofanynumberoffamilymixesatRyan’sgraduationparty.

2008andanotherOprahshow.Aswiththefirst,theshowbroughtmanynewmemberstotheDSRandamongthemwereNatalieandKristinawhoturnedouttobeRyanandAnna’shalfsisters.TheirmomhadwatchedtheOprahshowandreachedouttoWendyabout“thatladyandhersonIjustwatchedonOprah,”notfullyrealizingthatWendywas“thatlady”!ThemompostedhertwodaughtersontotheDSRassheandherhusbandwereinfullsupportoftheirrighttobecuriousandtoknowtheirdonorkin.SincetheylivedinBostonandAnnaandherfamilywereinNewYorkandallwantedtomeet,WendyandRyanfleweastforanotherNYmeeting.

“BythistimeRyanandAnnawerepros.”Wendyremembers.“TheyledthewayandmadeiteasierforNatalieandKristina.TheyprovidedthegirlswithmedicalinformationandansweredquestionstheyhadaboutLance.Theyalsohelpedsetthepaceandtoneforhowthefourteenswouldgettoknoweachotherandbegintoestablishsiblingbonds.Gameswereplayed,andteenshungout,asteensdo.AsRyanhadlongsincelearned,“Itbeginswithsimpleconversation.”

ItwouldbesonicetobeabletoreportthatallproceededsmoothlyanduneventfullywithRyanandhishalfsistersbutthishasbeenastoryofjoyanddisappointment,unexpecteddelightsandsomebumpsintheroad.Whiletheyhaveenjoyedsomegoodtimestogether,includingaweekendinwhichallthreeEastcoastgirlsspentaweekendattheKramer’shomeinColorado,onebumpintheroadcameviaDNAtesting—theverytoolthathadledRyantoLance.

In2012WendywascontactedbyanewDNAtestingcompanywhowereofferinganewtestingtoolthatcouldbeofgreatbenefittodonorfamiliesin

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particular.Thecompany—whichwillsurelygounnamedhere—neededthreedonorfamilygroupstotestthemothersandthehalfsiblings.WendyandRyansignedon,Annaandhermomjoinedin,asdidNatalieandKristinaalongwiththeirmom.ThecurveballthatnooneeversawcomingwasthenewsthatAnnawas“notgeneticallyrelated”toRyan,NatalieandKristina.Thisscientificuntruth,testedtwice,anddeclared“100%accurate”bythenotedscientistattheDNAcompany,sentalltheparticipantsintoatailspin.ItwasconfusingandhurtfultoallbutmostdifficultforAnnawhohadherunfoldingidentitytemporarilychallengedandsnatchedawayfromher.UltimatelyandonlyafterWendy’ssheergritprevailed,Anna’sgeneticconnectiontotheotherswasconfirmed.

Aswithmanyhalf-siblinggroups,distancecanbeamainfactorwhendeterminingtheprogressionandclosenessofnewlyfoundgeneticrelatives.Havinghalfsiblingsspreadacrossthecountry(ortheworld)canmaketheconnectionsmoredifficulttodeepen,asspendingtimetogetherismorechallenging.Aswithanyfamily,it’sthepeopleyouseemostoften,andthosewithwhomyouhavethemostincommon,thatyouseemtoholdmostclose.Ryanandhishalfsistersnowhavebusyadultlives,soget-togethersjustdon’thappenasoftenaseveryonewishes.

AndHereWeGoAgain…

Overtheyears,WendyandRyanhavehadmanyconversationsabouthowmanysiblingshemighthave.Theyhaveworkedwithvariousnumbersandsomehowlandedon“between20-30.”Wendyexplainsthattheyreallydon’tknow.Atonepoint,CaliforniaCryobankhadtoldthem“one.”Thenthetalkativewomantheretoldthem“many.”ThebanktoldLance12.Thosewerethereports.Thentherewerethefacts.Lancedonatedthreetimesaweekforfiveyears.Eachdonationcouldhavebeensplitintobetween8-24sellablevials.WhenWendyandRyanranthenumbers,theyfoundthattherecouldhavebeenasmanyas18,000sellablevialsofsperm.“We’llgowith20-30.”Wendysaid.

In2008Ryanwasawareof6halfsisters,thethreehehadmet,thetwowhoseparentswouldnottellthemthattheywereconceivedwithadonor,andtheonewhosemotherhadforbidallcontact.Wendysaysthatinsomeways,thiswasenough.RyanhadhadhisquestionsansweredandhealsofeltthatheandtheDSRwerevisibleenoughthatotherscouldfindhim.“Stilltherewassomecuriosity,”Wendysays.“Whyall

girls?”Ryancouldn’thelpwonderifhewastheonlymaleoffspring.August2016:enteranewhalfbrother.

TheemailcameAugust22,2016.Theheadingwasfamiliar.“Donor1058?”Itwasanothermotherwriting.ShehadreadanarticleaboutWendy,RyanandtheDSRintheNYTimesandasked,“Isyouractualdonornumber1058?”Wendyrepliedthatitwasandwithinmomentsthetwomomsweretalkingbyphone.Theothermotherexplainedthatshehadason,whoisayearyoungerthanRyan,whodidnotyetknowhewasdonorconceived.HisparentswouldsoonbetellinghimabouthisconceptionandaboutRyan.

Wendywouldsoonlearnthatitisverydifferentwhenpeoplearematchedasadultsthanaschildren.Andsheobserves,“mendothingsdifferentthanwomen.”WhileWendyandRyan’snewhalfbrother’smomareformingareallynicefriendshipandhaveenjoyedlongtelephoneconversations,Ryanandhisnewhalfbrotherhavethusfarhadlimitedcontact.Theyhaveexchangedemails,andspokenbyphonebutneitherseemseager—atthispoint—formore.Althoughcloseinageandsharing½theirDNA,theyareindifferentplacesintheirlivesandhavehadvastlydifferentlifeexperiencesregardingdonorconception.

WhattheexperiencewiththenewhalfbrotherandhismomconfirmsforWendyisthatdonorconceptionconnectionscomeinallflavors.Sheisespeciallyfondofthisnewmomandtheyseemtohavealotincommonthatgoesbeyondtheirsons’DNA.Wendyhopestheywillforgestrongbonds.InsomewaysthisissimilartoherexperiencewithLance’sparents—sheisclosewiththegrandmother,RyanisclosewithLanceandhisparentsandRyan’shalfsistersandtheirfamilieshavenoon-goingcontactwithLanceorhisparents,althoughonehalfsisterrecentlyexpressedinterestinreachingouttoLanceandhisparents.Wendyisfriendlywithoneofthemoms,butnotsomuchwiththeother(sincetheDNAdebacle).Allflavors.Allshapesandsizes.Everchanging.

LessonsLearned:WhyTellOneFamily’sStory

Lookingbackatthe26or16-yearpointdependingonhowyoucount(fromRyan’sbirthorfromthebirthoftheDSR),WendyandRyanhavelearnedalotthattheyfeelisrelevanttootherdonorfamilies.Whileeveryfamilyisdifferent,thesearesomeofthemessagesthattheywanttopassontoothers.

1. Parentsneedtolistentoandheartheirchildrenandtrusttheywillguidethem.Astheylookback

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ontheoriginsoftheDSRandonRyan’ssearchforhisdonor,WendyandRyanbothacknowledgethattheirshasbeenajourneyinwhichshefollowshisleadortheymoveforwardtogether.InWendy’swords,“RyanandIheldhandsandjumpedofftheclifftogether.Wedidn’tknowwhowewouldfindorwhowouldfindusbutwewereabletotakeeachstep—andmakeeachleap--becausewehadeachother’shand.”

Sadly,WendyandRyanhaveencounteredparentswhoinWendy’swords,“actoutoffearnotlove.”“Itisnotenough,”Wendyobserves,“forparentstotelltheirchildrentheyweredonorconceived.Theymustalsoacceptandhonortheirchild’srighttobecurious,theirrighttosearch,theirrighttofindandtoconnectwiththeirfirstdegreegeneticrelatives.”

2. Wendyisoftenpuzzledwhenpeopleaskherwhyshedidn’tclosedowntheDSRwhenRyanfoundhisdonor.Sheisequallypuzzled,whenpeopleassumethatforher,theDSRwassimplyabusinessventure.ItwasneitherabusinessventurenoratooljustforRyan.AstheDSRhasunfolded,ithasbecomecleartoWendyandRyanandallthoseactiveinit,thattheDSR’smissionextendsbeyondsearching.Itincludessupportforthedonorfamilycommunity,educationandadvocacy.Wendycaneasilyrememberatimewhenspermdonorswereoftenwomen’sgynecologists,whenspermbanksofferedalmostnoinformationaboutdonorsandsurelywhennooneconsideredtherightsofdonoroffspring.Changewouldnothavecomeandwillnotcontinuewithouteducationandadvocacy.

3. ManyassumethatthedonorconceivedpeoplepostedontheDSRareonlyinterestedinknowingaboutwhotheirunknownbiologicalrelativesare.Formanythough,it’smuchmorethanthat.Itisadesiretobeknown.Ryanwantedtofindhisdonorbutmoreimportantly,hewantedhisdonortoknowthatheexisted.Italsomatteredalotthathecouldseekandsearchonhisowntermsandnotbedictatedbythespermbank’sseeminglyselfservingrules.Theage18isarbitrary,asmanydonor-conceivedpeople,likeRyan,haveestablishedenrichingrelationshipswiththeirdonorslongbeforetheageof18.Ryandidnotfeelitwasrightforaspermbanktowithholdessentialinformationabouthisancestryand

biologicalrelatives,notevenofferingupapossibilityofmutualconsentcontact.

4. Donorconceptionrelationshipscannotbenamed.Peoplemaytrytosay,“Itislikeaspecialaunt”oritis“likeaclosecousin”butdonorkinshipcannotbenamed.Donorfamilyconnectionsrelyonmutualconsent.ThiswassomethingRyanfullyunderstoodatayoungage.AsWendyandRyanidentifieddonorsibs,thereweretimeswhentherewasmutualconsentandsadly,timeswhenitwasabsent.

IthasalsobeeninterestingtoWendyandRyantoseehowRyan’shalfsiblingshaverespondedtoconnections.Anna,forexample,metLanceandhisparentsatRyan’scollegegraduationandallsharedawarmfamilyweekendtogether.Andyet,toWendyandRyan’sknowledge,therehasbeenlittlefollow-up.Lance’sparentsareveryclearthatRyanistheirgrandson.Infact,Lance’smomsaysshewentthroughagrievingperiodoverhavingmissedthefirst15yearsofRyan’slife.Bycontrast,theydonotseemtoregardAnnaastheirgranddaughter,nordoesshereachouttothemasgrandparents.Takeawaymessage?Sometimesgeneticconnectionsleadtoastrongsenseofkinshipandothertimes,theydonot.

5. Livinginan“instantaneous”timemakesitdifficulttowait.BeingontheDSRinvolveswaiting.Notforall.Notallthetime.Butlongstretchesoftimecanpasswhenoneissimplywaiting.RyanKramerisExhibitA—hefoundedtheDSRandwaitedsevenyearstobecomethe2,910donoroffspringtomatch.HishalfsisterAnnamatchedtheverysecondshejoinedtheDSR.

6. Navigatingdonorrelationshipsalwaysinvolvesthebalancingofprivacyandsecrecyandsortingoutwhen,ifever,the“rights”ofthedonorsupersedetherightsofthechild.

7. Languageispowerfulandcanbeunsettlingfordonorfamilies.Wendy’sapproach,fromthestart,wastohaveRyantaketheleadwithlanguage.Fromthetimehewasinpreschool,shelistenedashetriedonandexperimentedwithwaystotellhisstory.Sherealizedalongthewaythatheneededtotrywordson,toexperimentwiththem,todetermineforhimself,whatfeltright.Sheknewthatwordsarejustwordsandtheydonotdefinerelationships.Shestoodbyas

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Ryantriedonwordslike“dad”,“donordad”and“father”and“grandparents,”knowingalwaysthatnothingRyanwouldsaywoulddiminishhisrelationshipwithher.Infact,atonepointhesaidtoher,“YouknowthatIhaveonlyoneparentandthatisyou.”Therehavebeentimes,also,whenshehasseenthatwordscanbeusedforconvenience.Forexample,RyanwasatLance’shomeforasmallpartyrecently.Anotherguest

walkedinandsaid,“HeyRyan,where’syourDad?”Ryanrememberspausingforjustamomentandthenrespondedwithasmile,“He’sinthekitchen.”Wendy’sadvicetootherdonorparentsistotakenoticeifthereisawordthatreallytroublesthemandifso,tothinkaboutwhyitsetsthemoff.

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