Choice Mom Guide to Donor SpermA compilation of tips, sperm bank policies and Q&A from ChoiceMoms.org

this installment brought to you by our 2011 “donor conception” keyword sponsors:California Cryobank • The Sperm Bank of California • Cryogenic Laboratories • a consortium of mental health professionals

one in a series compiled by Choice Moms LLC • email: info at choicemoms.org

Welcome to the DiscussionA message from Choice Moms Founder Mikki Morrissette

PICKING THE RIGHT SPERM BANK, AND SPERM DONOR, FOR YOU

There is nothing more simultaneously odd, humorous and scary as picking a sperm donor from an online catalog and deciding ‘THIS is going to be the father of my child.” It can seem a bit like a Match.com date that never shows up to buy you dinner, but hopefully leaves you pregnant in his absence. Some women say they screen him as closely as they would were he to actually be a potential mate, even rejecting him on the basis of what he lists on the profile as his favorite play, or how his voice sounds on an audiotaped interview.

To accommodate the fact that Choice Moms are the growing segment of the sperm donor industry, sperm banks are catering more to the fact that clients talk to their kids at an early age about being donor conceived, and offer as much accurate detail as they can without compromising the private identity of the donor.

Yet there is MUCH more to the donor conception process than picking the provider of sperm. You are not only marrying your child to the genetics of the man, but to the policies of the bank you choose.

What you’ll find in this e-book•Q&A with participating sperm banks, who work with ChoiceMoms.org to provide educational

resources, about their policies. I asked each of them the same questions, and print the words they offered.

•Tips and expert insight about what you need to know about choosing donor sperm.

as always, welcome to the discussion, and welcome to the journey

Table of Contents

Q: How do you select donors?! 3

California Cryobank 3

The Sperm Bank of California 4

European Sperm Bank USA 4

Fairfax/Cryogenic Laboratories (CLI) 4

Q: How does your open-identity program work? ! 6

California Cryobank 6

The Sperm Bank of California 6

European Sperm Bank USA 7

Fairfax/Cryogenic Laboratories (CLI) 7

Q: What donor limits do you have?! 8

California Cryobank 8

The Sperm Bank of California 8

European sperm bank 8

Fairfax/Cryogenic Laboratories (CLI) 9

Q: How do you track births?! 10

California Cryobank 10

The Sperm Bank of California 10

Fairfax/Cryogenic Laboratories (CLI) 11

Making Contact! 12

as always, welcome to the discussion, and welcome to the journey

Excerpted From The Sperm Bank of California website 13

Genetic Testing! 17

Checklist of Questions ! 22

For Your Child’s Sake 22

If you are using an anonymous donor 22

If you are using an open-identity donor 23

Logistical Questions 23

Personal Preferences 23

Clinic question 24

Other Expert Insight! 25

Links to related Stories only on ChoiceMoms.org 28

Others in the Choice Mom e-book series 28

Another Resource from Choice Moms Founder 28

as always, welcome to the discussion, and welcome to the journey

Q: How do you select donors?Do you verify information they provide? Provide medical updates?

I started the process by asking Choice Mom-friendly sperm banks (defined as those who support Choice Mom® resources through advertising and events), to answer questions about the way they operate their business. The banks who responded are listed here in order of their longevity with Choice Moms®. Please note that I have not verified the information independently and am merely reporting what they told me.

CALIFORNIA CRYOBANKBasic requirements: The majority of sperm donors are recruited from world-class universities, including UCLA, USC, Stanford University, Harvard University and MIT. Other donors are professionals in fields such as business, medicine, law, and the entertainment industry. We recruit donors via Internet advertising, information seminars, and university publications. The 3-6 month screening process begins with a basic set of criteria that includes: age between 19 and 39, enrollment or degree in four-year university, minimum height of 5-foot-9, good health.

Qualification process: Mikki's note: Not all sperm will survive the freezing and thawing process, so semen samples at all banks must be evaluated to determine whether or not they will be useful. Many potential donors offer less-than-adequate specimens. If a potential donor's semen sample meets count and motility standards, it takes at least another three months for the applicant to become a fully qualified donor. During this period, a prospective donor must leave several semen and blood samples for laboratory testing and genetic screening.

Medical History: One of our Genetic Counselors conducts a genetic interview which includes a review of the potential donor's long profile. The long profile includes information about the health of the donor, his siblings, his parents, his grandparents, his aunts, his uncles, and his cousins. The family medical history is carefully evaluated for any birth defects or known genetic conditions. A donor applicant is disqualified from participation in the donor program if there is a family history which indicates that his offspring may be at increased risk for a birth defect or known genetic condition. Once the genetic counselor, donor manager, laboratory manager, and the medical director are satisfied that the potential donor is a good candidate for our donor program, he becomes a fully qualified donor.

as always, welcome to the discussion, and welcome to the journey

THE SPERM BANK OF CALIFORNIADonor applicants go through a rigorous screening process that includes STD testing, general health screening (including a physical exam, a complete blood panel, and a detailed personal and family health history), and an HIV risk assessment interview. This screening is repeated every 6 months with an abbreviated personal and family health update. We ask our donors to let us know if new personal or family health issues arise in the future. Personal and family information is self-reported by the donor. We ask for this information multiple times during the screening process and if there is insufficient information, we ask the donor to speak with relatives to obtain more information. We check all the information for inconsistencies and if at any time we feel a donor is intentionally giving false information, we reject him from the program. Our Medical Director reviews the complete file on all prospective donors prior to their being accepted into our program.

In addition to the medical screening outlined above, all donor applicants are assessed based on criteria of interest to our recipients. For example, we make efforts to maintain an ethnically diverse donor pool. We also look for donors with ranges of interests, talents and physical traits as we know there is variety in what donor characteristics appeal to women.

EUROPEAN SPERM BANK USAAll sperm donors go through a rigorous application process before being admitted into the program. This process involves social questionnaires, a physical with blood draws and family medical history. Two semen quality control checks carried out in the lab are also vital steps toward admission. Only after approval from both our Medical Director and Geneticist can a donor begin donating.

If any medical information changes for a donor, the website profile is updated. Depending on the extent of the change, a medical review is performed along with notification of previous clients.

All information is verified by duplicate interviews performed by the Managing Director and Medical Director during the application process. A valid photo ID is required on all donors from which background checks are completed.

FAIRFAX/CRYOGENIC LABORATORIES (CLI)Each of our production labs recruits donors using approved ads and flyers. Ads are placed

in local papers and flyers are distributed in specific geographic areas shown to have a large

population of our required demographic. Much of our recruiting success comes from online

as always, welcome to the discussion, and welcome to the journey

advertising that directs prospective donors to www.123donate.com, the site that guides them

through the application process. For an overview of the screening process, we have produced a video that describes the process. The Fairfax video is linkable here. The CLI video is linkable here.

As more sperm banks become interested in helping Choice Moms LLC provide educational resources to the community, we will add them to this guide. Note that four other banks were queried but did not reply to these questions.

as always, welcome to the discussion, and welcome to the journey

Q: How does your open-identity program work?Do you track them over time? Do you require them to stay in touch? How do you encourage them to have contact with offspring, and when?

Again, I asked sperm banks to reply who offer ongoing support to the Choice Mom community through advertising on this website. Featured here are responses (as of Fall 2010) to the question about how the open-identity program at each bank works. This is one area in which banks differ quite a bit, and a policy that evolves over time, so be sure you are clear on up-to-date policy before you work with a sperm bank. Reminder that I am merely reporting what they sent to me in response; I have not independently verified the information.

CALIFORNIA CRYOBANKOpen Donors agree to one contact with any offspring who makes the request through CCB after they turn 18. We are very clear with the donors that when they select to be Open, it is a matter of "when" they will be contacted, not "if." In general, it takes a lot of time and energy to make it as a CCB donor. While many donors are initially attracted to the financial aspect of donating, those who make it through the extensive screening tend to have a very altruistic side and are excited by the chance to help people who want to have a family.

We have only had the Open Donor program for about eight years, but we have always offered (and continue) to contact Anonymous Donors whenever requested by offspring. Anonymous Donors have been very receptive to contact with their offspring. We contact ALL retired donors for information updates: 2, 5, 10, 15 and 20 years after retirement.

THE SPERM BANK OF CALIFORNIAThe Identity-Release® Program at TSBC is the oldest, most thoroughly researched open-identity program in the world. Donors in our Identity-Release® Program agree to release their identity and contact information to donor-conceived adults who request it from TSBC. We maintain periodic contact with donors in our Identity-Release® Program and also ask them to notify us if their contact information changes. Prior to their first offspring turning 18, we have more extensive contact with the donors to provide them with resources and information about what it means to have contact with donor-conceived adults. We are available to speak with them and their partners about any specific concerns they may have at any point in the process. We have done an extensive needs assessment to develop protocols that provide the best outcomes for donor-conceived adults and their donors. We continue to do ongoing research in this area to

as always, welcome to the discussion, and welcome to the journey

make our program the most effective it can be and to raise awareness about open-identity options for people who are considering donor-assisted family building. While we do not guarantee that all our Identity-Release® Program donors will be open to contact with donor-conceived adults, we know that most of them are not only expecting to be contacted but are looking forward to it.

EUROPEAN SPERM BANK USADonors agree to be involved in the open donor program during the initial application process. The donor’s understanding of the program is documented on several occasions during the collection of marketing materials available on the website (audio interview and extended profile). ESB-USA is the only sperm bank that is all open-access donors. When a child turns 18, they are able to contact the bank to request contact with the sperm donor. The bank will facilitate an exchange that is appropriate for both parties. After which it is up to the child and donor to determine future contact and exchange information. Once a donor retires from the program, they are contacted every year with a request to update medical history along with contact information. Donors are encouraged to join the Donor Sibling Registry (DSR) at the time of retirement.

FAIRFAX/CRYOGENIC LABORATORIES (CLI)All of our donors, not just ID Options donors, participate in an online annual update system. This system emails a request to donors who are no longer producing; this request directs them to a site that allows them to enter all information that has changed since their last visit to the cryobank. We are working to contact past donors that produced at a time when email was not common to request their updates as well. This update system is incentivized.

Our ID Options donors agree to allow Cryogenic Laboratories, Inc. or Fairfax Cryobank to share identifying information with registered offspring, 18 or older, conceived by donor insemination with their semen specimen. This information will be his name, date of birth, and last known contact information. Donors will be informed that their information has been requested. We do not encourage our donors to contact offspring, in fact only the offspring can initiate contact.

As more sperm banks become interested in helping Choice Moms LLC provide educational resources to the community, we will add them to this guide. Note that four other banks were queried but did not reply to these questions.

as always, welcome to the discussion, and welcome to the journey

Q: What donor limits do you have?How do you limit the number of offspring born to the same donor? What do you do with the leftover vials if a donor has been “used up”?

Note that thanks to communities such as Donor Sibling Registry, some families have found that their donor has been used to create more than 50 offspring -- or more! Thanks to the collaborative efforts of online tools (including Facebook), sperm banks have to create policies that limit the numbers of offspring created from their most popular -- expensively recruited and tested -- donors. Some women have found that a donor has been shared with another bank, simply using different identification numbers. And in MANY cases families don’t report a birth from a donor, so the numbers they have for tracking and limiting has thus far been not particularly meaningful. So this unregulated aspect of the business deserves close monitoring for those women who feel unsettled at the prospect of having a child with perhaps more than 100 half-siblings in the world.

CALIFORNIA CRYOBANKWe monitor our donors in order to limit the total number of family units to 20-30 worldwide by carefully reviewing the duration a donor remains in our program, the number of specimens obtained and the total number of vials processed. Limiting donor vials is an important part of the process.

THE SPERM BANK OF CALIFORNIAWe limit our donors to 10 families.  Some of our families have more than one child.  Most of our donors have between 5 and 15 offspring total, including siblings. If a donor has reached his family limit, we will keep his inventory but limit use to the existing families for siblings. If the existing families do not wish to use the vials, then they are destroyed.

EUROPEAN SPERM BANKIn the United States, all donors are limited to 25 offspring/families. Donor sales are limited by regulation in a number of countries, such as the United Kingdom, Denmark, Sweden, Switzerland, Norway, etc. We comply with these regulations. When a donor is retired, ESB-USA attempts to keep a quantity of vials sufficient (minimum of 50 vials) to allow future siblings. It is not possible to predict with absolute certainty the demand for future siblings so all clients are encouraged to purchase and store vials for future use.

as always, welcome to the discussion, and welcome to the journey

FAIRFAX/CRYOGENIC LABORATORIES (CLI)We distribute donor sperm from a particular donor that can produce 25-30 family units in the United States and additional 10-15 family units internationally. A family unit is defined as one or more children with the recipient or in the case of a lesbian couple wherein both partners carry a child using the same donor sperm. We hold on to some excess inventory to ensure the availability for sibling pregnancies within existing families. Additional excess inventory can be sold for research that does not include the creation of fertilized embryos.

As more sperm banks become interested in helping Choice Moms LLC provide educational resources to the community, we will add them to this guide. Note that four other banks were queried but did not reply to these questions.

as always, welcome to the discussion, and welcome to the journey

Q: How do you track births?What do you estimate about how many families report back on live births from your donor pool? What system do you have for tracking?

In general it has been thought that roughly 40 percent of families report back to their sperm banks about a live birth. Smaller banks, such as The Sperm Bank of California, have systematically been able to keep their number much higher, perhaps at 90 percent. Larger banks like California Cryobank are now making a concerted marketing effort to encourage families to report back, especially those who haven’t requested a shipment of sperm vial for some months. Limits on offspring to one donor are meaningless without accurate tracking numbers. But banks often ship to clinics, who don’t always report back after a birth. And families with newborns tend not to think about it, as they eagerly put the days of trying and waiting behind them. So the new speculation is that tracking numbers have been as low as 20 percent at many banks.

CALIFORNIA CRYOBANKMore up-to-date information to come. The bank offers an online form that it encourages all sperm recipients to take advantage of after birth.

THE SPERM BANK OF CALIFORNIAWe track the distribution and use of every vial in our databases.  We ask that recipients report pregnancies to us within 60 days so that we can maintain our 10 family limit.  We provide a response card with every shipment or pick-up to make this simple, and pregnancies may also be reported on our website.  If we do not receive a pregnancy outcome report, we contact the recipient.

Based on earlier research, we estimate that 90-95% of recipients report their pregnancies to us. Since the time this study was conducted, we have further refined our data collection procedures so we consider this 90-95% to be a conservative estimate.

EUROPEAN SPERM BANK

We estimate that the majority of clients report back online through our website for this. We make periodic attempts to prompt reporting utilizing email and phone follow-up if necessary.

as always, welcome to the discussion, and welcome to the journey

FAIRFAX/CRYOGENIC LABORATORIES (CLI)We strongly encourage both pregnancy and birth reporting from all of our patients. We send pregnancy report paper work with each shipment and have made the process available online so that reporting is easier than ever. Both patients and clinics can report pregnancies, we have the ability to separate duplicate reporting records. Because we cannot mandate pregnancy and birth reporting we rely on the recipients to contact us with this information. Obviously, it is in the best interest of everyone involved to report this information to ensure that we have accurate tracking information.

 

As more sperm banks become interested in helping Choice Moms LLC provide educational resources to the community, we will add them to this guide. Note that four other banks were queried but did not reply to these questions.

as always, welcome to the discussion, and welcome to the journey

Making ContactShould we have contact with half-siblings and donors? How?

As our kids get older, questions will naturally come up about whether to make contact with half-siblings -- and how. Do we call them half-brothers and sisters? What if their family values are not the same as ours? How do we control the relationship? Eventually, by the time our kids turn 18, they might even want to make contact with their donor. Even if he was anonymous and guaranteed privacy. Even if he’s now married with kids of his own, and no longer sure how to incorporate into his life unknown offspring -- spawned from seed he offered up during college. This will be a growing area of ChoiceMoms.org, as more of our kids ask these questions and we share our answers and hear from experts on ways to address them. Inevitably, what we think about it pre-conception will change after.

From Mikki: A woman with two young children wrote to Choice Moms to say that a half-sibling of her kids was traveling to the U.S. from another country and wanted to meet, since the children shared the same sperm donor. The mother didn't feel prepared to talk to her kids about how they were connected, yet didn't want to miss the opportunity to meet.

Here's the advice offered:

• Visit Donor Sibling Registry, for insight.• Listen to the Choice Chat podcast interviews I've done about donor conception. You

can find the podcasts listed here. You'll find interviews with Ryan Kramer, a donor-conceived adult; with an anonymous donor who has met offspring; with Ken Daniels about his research into donor-conceived families; and one of the most popular shows with researcher Joanna Scheib at The Sperm Bank of California about what donor-conceived offspring tend to want to know.

• The "Choice Moms Answer the Tough Questions: Do I Have a Dad?" CD compilation includes excellent insight from experts about talking about donors as well as daddies with our kids.

• I always recommend Donor Conception Network for their Telling and Talking series.

as always, welcome to the discussion, and welcome to the journey

• You'll find the ChoiceMoms.org "Resources" keyword includes recommended storybooks we can read with our kids, as well as book options about donor conception.

• Finally, see this blog post about how my kids and I have created a ritual around the old family tree assignment, which is just another way of talking about our important community connections -- biological and non.

Having meaningful conversations with our kids over time about what makes a family and who is important to us are great bonding experiences. The earliest conversations won't seem like it, but are laying the groundwork for the deeper conversations to come.

This is just the beginning of lifelong exploration of how we consciously build connections, or not, with the people around us.

EXCERPTED FROM THE SPERM BANK OF CALIFORNIA WEBSITETSBC has conducted extensive research about the donor, parent and offspring triad, based on its Identity-Release® Donor program, whose earliest offspring are now older than 18. The bank is a smaller one that serves as a liaison for contact, through its Family Contact List.

What have experiences been like? Do families who have already matched have any advice?

Overall the feedback on the Family Contact List has been very positive. Each family contact situation is different as each family is different. Some families have developed close friendships either in person or long-distance. Other parents have found that they didn’t “click” with their matches but are staying in touch so their children can have the option to know each other in the future. Still other families have chosen not to keep in contact with their matches.

Think It Through: Friends, Family or Strangers?

When you choose to create your family through donor insemination, you have to approach the process deliberately and mindfully. This same willingness to plan ahead will serve you well as you decide whether to add your family to the FCL. Consider these questions:

What is your motivation? It is important for you to think through your own motivation, as this may affect your experience of, and satisfaction with, the matching process. If your child is old

as always, welcome to the discussion, and welcome to the journey

enough to express a preference, can you be flexible about slowing down or possibly postponing the process, if that is what you child wishes?

What are your hopes and expectations? Identify your own hopes for connecting with other families who share your donor, and practice putting them into words. Say them out loud to someone else. It will also be helpful for you to have a clear script in mind with which to communicate with other families once you have a match. Do you want to limit your contact to a single phone call or meeting, or do you want it to be ongoing?

You will need to be open to changing your mind and adjusting your expectations once you and your children are actually in contact with other families whose hopes and assumptions may differ from your own. This will be an experience involving your most near and dear, total strangers, and uncharted relationships, so you should expect the unexpected.

Take It Slow

Recipients who have gone through the process recommend that you start slow in terms of the level and pace of contact. In the first flush of excitement at making contact, it may be tempting to speak on the phone often or to schedule multiple meetings. However, this has the potential to set you up for disappointment or misunderstandings if you come to realize you have mismatched expectations of contact. Just as with any relationship that involves both you and your children—such as relationships with neighboring families, extended family, or families of your children’s classmates—it’s a good idea to maintain respectful boundaries.

Consider the Logistics

There are logistical issues outside your control that will affect your experience.

Who Are the Families? The other families on the list for your donor may or may not be demographically similar to your own. In general, we find that single moms and lesbian couples are most likely to join the Family Contact List while heterosexually-partnered parents are least likely to join. However, families of all types participate in the program. And remember that families are likely to live anywhere, not just in your city or state.

Language Matters: What should the children call each other?

You doubtless have your own way of referring to your child’s donor (donor, biological father, donor dad, etc.), and you will want to consider in advance how you’d like to refer to the children who share your child’s donor. Some matches refer to each other’s children as siblings. Others

as always, welcome to the discussion, and welcome to the journey

consider the children somewhere between friends and family and have chosen not to use the words “brother” and “sister.” Our culture is lacking adequate kinship terms for people who share genetic relatedness, but are not socially related. Some families have come up with their own creative terminology, such as “dosies” for “donor siblings.”

This is something that parents will want to discuss. We suggest that you identify your own preferences before you make the contact and be ready to communicate your choice of vocabulary clearly and comfortably to other families so that you do not find yourself in a situation that is awkward and potentially confusing for your child.

It’s a Family Affair

Perhaps the most important decision you’ll face is when and how to discuss this with your children and your extended family.

Ages and Stages. Some parents with very young children initially choose not to explain the genetic connection. They may meet on a casual play date basis if a match lives nearby, or they may postpone meeting. Others choose to explain using simple language, as they use for donor conception, to normalize the concept for their children.

If your child is school-aged, and understands the donor connection, you will want to avoid raising his or her expectations about potential contacts in case you and the other family have different preferences. Approach the possibility of contact as an interesting opportunity to gain more information about his or her family tree, but take care not to exaggerate its significance.

It’s best to let older children take the lead in determining how much family contact they desire. They may decide they are not interested in contacting matches. As one recipient put it, “Probably the most important thing in my mind is to remind myself that it’s not about me, really. It’s about our child and opening a door for him. As he gets older, he’ll take it his own way.”

Sibling Situations. If you have more than one child with the same donor, or with different donors, you may approach family matching with additional concerns. Two children with the same donor may have different feelings toward or levels of interest in meeting their “dosies.” If your children have different donors, and only one has the opportunity to meet others who share their donor, you might want to have a conversation about how this will affect your family. If you have a blended family, the siblings you are raising together may be sensitive about the notion that a genetic sibling from outside the family has any special status.

Where can I get more information?

as always, welcome to the discussion, and welcome to the journey

TSBC Director of Research, Joanna Scheib, and Executive Director, Alice Ruby, conducted the first study on the experience of contact among families who share a donor. The research is now published: Scheib, J.E. & Ruby, A. (2008). Contact among families who share the same sperm donor. Fertility & Sterility, 90, 33-43.

Calling all Choice Moms who have made some contact with half-siblings (or donors, if your kids are old enough): The community will benefit from your experiences and conversations. Consider sharing them with Mikki at info @ choicemoms.org and, without identifying information, I will share them on ChoiceMoms.org. What have you said with your kids? How have they reacted, at different ages and stages? What relationships have worked, and not, in the half-sibling journey? Does your child know the donor, and how has that relationship worked? What parameters and expectations have you set with donor sibling families?

ChoiceMoms.org is for sharing our stories and experiences so that all can benefit from those who have gone before.

as always, welcome to the discussion, and welcome to the journey

Genetic TestingHow can we keep our donor-conceived offspring safe from genetic anomalies?

A woman on the Choice Mom discussion board asked what she could do to better guarantee her child's genetic health from an anonymous donor. She asked: "One of my concerns is the donor's medical history. I want to have testing done independently to be SURE there are no problems. I want the sample to be tested for MORE than what the sperm banks test for. To get through this difficult process and have the little one suffer from an illness would be so devastating. Does anyone know of a company that will test a vial of sperm from my chosen donor and run genetic/disease tests to be sure the sample is as healthy as I can know, based on what science can tell us? I don't want IUI performed with any sample that I didn't have checked out personally."

I asked a sperm bank genetic counselor I know to weigh in on this.

Here is what Pamela Callum at California Cryobank said:

"I want to provide you with some information as to what you can do to help ensure that your donor has had the best testing and evaluations for your needs. To begin with, however, it is important for you to know that there is no single genetic test that is best for every donor. There is also no way to be sure that your child will not have a medical problem. Three to four percent of all children are born with birth defects no matter how they are conceived. Most of these medical problems cannot be tested for or prevented prior to birth.

We ALL carry genetic mutations in our DNA that we don't know about and that don't show up in our family histories. We can't even predict all of the mutations that we carry, even by examination of our family histories. Furthermore, many medical problems occur just by chance during a child’s development. However, it is not unreasonable that you want to do everything you can for the health of your child. That desire demonstrates that you will be a great parent.

Many sperm banks perform some genetic testing on their donors and evaluate the donors' family histories to varying degrees. There are professional guidelines published by the American Association of Tissue Banking (AATB) and the American Society of Reproductive Medicine (ASRM) as to how they should screen their donors. In addition, other professional bodies such as the American College of Medical Genetics (ACMG) and American College of Obstetricians and

as always, welcome to the discussion, and welcome to the journey

Gynecologists (ACOG) have genetic testing guidelines for everyone in the general population. However, they are only guidelines and sperm banks are not required to adhere to them, so it is important that you understand how your sperm bank evaluates their donors.

If your sperm bank follows some of the professional guidelines mentioned above, they have likely performed a reasonable evaluation of their donor applicants. There are THOUSANDS of other genetic tests available and they each cost hundreds or thousands of dollars to perform, so there is no easy way to determine what additional testing should be performed on the donor in whom you are interested.

Several companies currently offer genetic testing panels for 100+ disorders using new technologies and testing platforms. These 100+ panel tests are not recommended by any professional board for use in reproductive decision-making. However, this type of testing has certain benefits such as cost-effectiveness, and possibly the peace of mind that you are trying to achieve by pursuing testing for a lot of genetic conditions.

There are also down-sides to this type of testing.

• Some of the conditions on these panels are not life-threatening disorders and symptoms don't usually develop until people are in their 40s or 50s. They can be very treatable conditions and many people who have these conditions don't ever develop symptoms at all. In many cases, you would also have to carry a mutation for the same condition to be at risk of having a child with that disorder. You may be excluding a donor from consideration when your child is not at high risk to develop a medical problem.

• Since there are so many disorders on these panels, a lot of donors will come back as carriers for mutations in one of the conditions tested. If a sperm bank uses these panel tests to screen their donor applicants and doesn’t let the donor participate if he is a carrier of a genetic mutation, they would end up with a shortage of donors. We all have mutations. Even if your donor screens negative for 100 different disorders on a genetic testing panel, it does not eliminate the chance for you to have a child with one of these 100 disorders, it just reduces the chance of having a child with those conditions. It also doesn’t reduce the chance for other, untested conditions.

• Since these are not recommended tests to be performed on you or anyone else, testing will usually be performed at your expense if your sperm bank is willing to accommodate the testing at all. Many sperm banks may not be willing to accommodate additional testing and inconvenience to the donor unless there is a clear medical indication for doing so. Therefore, if you are interested in this type of testing, it is usually most appropriate to perform this testing on yourself first. A sperm bank that accommodates

as always, welcome to the discussion, and welcome to the journey

additional testing at your request will be more likely to then assist in testing a donor for specific disorders for which you have been identified to carry a mutation.

• The most important limitation, however, is that even if you test a donor using a 100 disorder testing panel, this does not mean you have tested the donor for the genetic factors that are relevant to him -- and this is what is important for your pregnancy. You have only performed the testing that the laboratory offers to everyone, not testing that is most appropriate for your donor.

So, how do you determine what genetic evaluations are most appropriate for your donor?

A three-generation family history evaluation by a trained professional such as a genetic counselor is the best established way to identify risks for inherited disease and determine what testing may be appropriate for an individual donor. However, since you also contribute 50% of your child's DNA, it is also recommended that you pursue an evaluation of your own family history evaluation with a genetic counselor.

While you may think that you know your own family history, many people are not aware of the significance of their family history to the health of their offspring, and what genetic evaluations they should consider for themselves.

In addition, an evaluation of your own family history may determine that testing should be performed on you first to determine what testing is appropriate on a donor. You can locate a genetic counselor in your area at www.nsgc.org. Consultations are also available over-the-phone by some facilities, including by California Cryobank, because we want to make sure our clients understand the importance of having their own family history risk assessment.

There are many details that you may want to consider when selecting a donor facility in order to help ensure that the evaluations of your donor are right for you and your pregnancy:

• How does your sperm bank evaluate their donors' medical histories?• Who performs these evaluations at your sperm bank? Are they performed by a physician,

genetic counselor, another clinical professional, a non-clinical professional?• What genetic screening tests does your sperm bank perform on their donors?• Do they follow the guidelines of AATB? ASRM? ACMG? ACOG?• What are the factors in your own family history that need to be considered relative to the

donor's family history?• If you want to perform additional testing on your donor, is your sperm bank able and

willing to perform this testing?

as always, welcome to the discussion, and welcome to the journey

What else should you know?One advantage of sperm donor conception is that you are looking at your eggs and a donor's sperm much more scientifically than if you were conceiving with a man you fell in love with. That means you have tools at your disposal to prevent potential medical problems for your child. However, the medical information available on a donor is static based on what he reported during participation in the donor program. Long-term medical information on the donor and his offspring can be relevant to the management of your child’s health.

And it’s important to understand that genetic tests and a donor’s family history evaluation do not completely eliminate the risk of medical problems. Be an informed consumer and make sure your questions about genetic testing have been answered before selecting a donor. Answers to these inquiries should be readily available on your sperm bank’s website or from their staff.

Some questions to ask include:

• What genetic tests were performed on your donor?• What were the results of the tests?• What are the limitations of the tests?• If the donor had an abnormal genetic test result, would he still be available as a donor?• Why don’t they perform a certain test you are interested in having performed?• How does the company determine which genetic tests to perform on their donors?• Will they perform testing for a specific condition in your family?• How is the donor’s family history evaluated?• What staff member performs those evaluations and what are that individual’s

qualifications?• Does the company follow up on the health of children born from its donors?• How do they manage reports of medical problems in the donor’s offspring?

What about you?

The American College of Obstetrics and Gynecology (ACOG) and the American College of Medical Genetics (ACMG) state that the best time to evaluate your family history is before you get pregnant. This gives you time to discuss the risks for medical problems and take action to reduce these risks or learn more and make decisions that are right for you. If medical risks are not recognized until you are already pregnant, you may have limited options for managing these risks or only a short amount of time to learn about and make decisions for how you want to proceed.

as always, welcome to the discussion, and welcome to the journey

Even if you are familiar with your family’s history and don’t think you need a genetic consultation, you might not be aware of the significance of some of your family history or the options available for managing that information during your pregnancy. A genetic counselor is trained to critically evaluate your family history and help you understand the meaning of the information collected. They will help you make a plan for managing any issues of concern including options that are available before you get pregnant and those that you may want to consider during your pregnancy.

A personal genetic evaluation can be especially important if you are using a sperm donor. Even if your donor has had genetic testing based on his own family history or ethnic background, the testing might not be sufficient based on your family or if you have an abnormal genetic test result. There are often more extensive genetic tests available for a specific genetic condition and they could be performed on your donor if you felt the need to pursue more testing. Again, the best time to find out about additional testing options, how long the testing may take to complete, and if your donor is available for testing, is before you get pregnant.

You may want to consider a personal genetic evaluation if you:

• Want to know about the risks to your children based on your age, family history, ethnic background, or exposures to medications, infections, alcohol, or other substances

• If your family members have experienced infertility or multiple miscarriages• Have a family history of cancer, mental illness, developmental disability, birth defects, or

mental retardation• Want to be informed about testing options that you can consider during your pregnancy

such as amniocentesis, CVS, and AFP or Quad tests.

You can prepare for your genetic consultation by talking to your relatives and discussing your family’s medical history. Your genetic counselor may also have a family history questionnaire to help you get started.

California Cryobank (CCB) Genetic Consultation Services offer personal genetic consultations both in-person and over-the-phone. They are available to all individuals who are planning a pregnancy, whether they plan to use an egg or sperm donor or not. They also offer consultations for egg donors and surrogates to help you understand how the medical history of those individuals might contribute to your child’s health. For more information, or to schedule a consultation with CCB Genetic Counseling Services, call (877) 943-6384.

as always, welcome to the discussion, and welcome to the journey

Checklist of QuestionsBefore you pick your sperm bank, know the answers to these questions

In recent years, media reports, legal cases and support group discussions have brought to light issues that concern parents of donor-conceived children. Preconception counseling is not always offered to discuss these questions with prospective parents who are simply eager to have a child. No independent governing body supervises the industry. So it is up to you to investigate and consider questions we’ve been discussing in this ChoiceMoms.org e-book (see keywords “donor conception” and “sperm” on the website for more up-to-date posts).

FOR YOUR CHILD’S SAKE

Think about what information you will want or need in a few years in order to answer your child’s natural questions and curiosity about the donor. For example, children will often ask:

•What the donor is like;

•What he looks like (will you receive a photo?);

•Why you chose this particular donor;

•If they can meet the donor;

•What the donor’s life is like now;

•What the donor’s family is like;

•Are there any health issues the child/adult needs to be aware of?

IF YOU ARE USING AN ANONYMOUS DONOR

•What information is available about the donor and his parents to use in selecting a donor? What information about other relatives?

•Are records kept? For how long?

as always, welcome to the discussion, and welcome to the journey

•Are medical records updated? How?

•Is non-identifying information available to my child upon reaching the age of maturity (e.g., age 18), or earlier with parental consent?

•How do you retain contact with the donor over time?

IF YOU ARE USING AN OPEN-IDENTITY DONOR

•Is identifying information available to my child upon reaching the age of maturity (e.g., age 18), or earlier if needed for medical emergencies?

•How is the information kept? How do you retain contact over time?

•What if your facility closes? How will the child be able to access this information about the donor in the future?

•Do you facilitate the first contact with the donor? How?

LOGISTICAL QUESTIONS

•How is sperm shipped?

•Can it be shipped directly to me for home insemination or must it be shipped to a physician?

•Can extra sperm be stored for possible use later for another child? How long can it be stored?

•How many vials are suggested?

•What is the cost per vial of sperm?

•What is the cost to store sperm?

•If motility, morphology, or count of the sperm is inadequate after thawing, what is the bank’s policy?

PERSONAL PREFERENCES

•What criteria are required of your donors? Are there education standards? Age limits?

as always, welcome to the discussion, and welcome to the journey

•Does the sperm bank have a selection of donors of the racial, ethnic, religious, educational, etc. background you are looking for?

•Does the sperm bank work with parents in alternative lifestyles?

CLINIC QUESTION

•Is a cryopreservation tank available to store sperm for future cycles?

My thanks to Dr. Joann Paley Galst for helping to compile this list. She is a past chairperson of the Mental Health Professional Group of the American Society for Reproductive Medicine. She is available for brief phone consultations at (212) 759-2783. See also the "Questions to Ask Series" produced by RESOLVE: About Donor Sperm Insemination Programs and Sperm Banks (#8), by Diane Clapp, BSN, RN, Medical Information Director

as always, welcome to the discussion, and welcome to the journey

Other Expert InsightWashed or unwashed sperm? Can we share vials with other Choice Moms?

Q: Whether a woman is using ICI, IUI, or doing home insemination with frozen sperm, she must order either unwashed or washed sperm from a bank. What is the difference?

Amy Erickson-Hagen, director of Cryogenic Laboratories offered this explanation:

"Washed" means the sperm is separated from semen. Most experts recommend using washed sperm. Unwashed sperm (sperm not separated from semen) placed into the uterus can cause a bad reaction, including nausea and vomiting.

ICI (Standard) Preparation: A cryoprotectant is added to the raw semen prior to freezing. The specimen is considered ready for intra-cervical insemination (ICI) or can be further processed at your clinic for intrauterine insemination (IUI) or in vitro fertilization (IVF).

IUI (Pre-Washed) Preparation: The seminal plasma (liquid portion) of the semen specimens is removed by washing and centrifugation and replaced with a biological buffer. A cryoprotectant is added to the washed semen specimen prior to freezing. The specimen is considered ready for use in an intrauterine insemination (IUI) or can be further processed at your clinic for in vitro fertilization (IVF).

Q: Can Choice Moms share sperm vials with each other when they are done building their families and have extra vials in storage?

A Choice Mom who is always thinking of ways to boost the community emailed recently to suggest a "sperm sharing" service. Essentially, she wondered whether we could offer a place on the website or discussion boards where women who have leftover vials of sperm could sell those to other Choice Moms. There are a few legal reasons why it would be difficult for ChoiceMoms.org to facilitate the sale of gametes (live tissue), although I know women who meet through Choice Moms resources have shared embryos and gametes offline. I consulted with a few of the sperm banks, to get their feedback. Here's what they told me:

as always, welcome to the discussion, and welcome to the journey

California Cryobank (Scott): Most of our clients with vials in storage are keeping them for future cycles or additional children. When their families are complete, they generally sell unused vials back to us (at 50% of original price). I don’t know many people interested in giving away their unused vials. We do have instances of clients transferring vials to one another, which we facilitate, but there is a $350 fee attached because of the extensive paperwork involved for our Client Services, Accounting, and Cryogenics departments. Vials are legal property, so it is not a simple process to complete a transfer between clients. We provide free storage for clients who buy 6 or more vials, so there aren't many people paying storage fees for vials they don’t want/need. She may want to check with her physician to see if they have any abandoned vials from previous patients. And she is welcome to post on our message board."

European Sperm Bank (Kristina): Women who place vials in storage and do not use them are able to sell them back to us at 75% of the original cost. Which makes sharing the vials with one another a less profitable endeavor for those who have already purchased. The Donor Sibling Registry has a section where women can connect and trade vials, etc. That would be the best source that I am aware of for finding vials at a lower price that are no longer needed. I wish your client the best in her search and I am happy to help or offer any other information that would be helpful."

The Sperm Bank of California (Alice): In general, we do not have a problem with someone purchasing vials from another recipient. However, it does raise some issues that should be addressed. First, we ask that whoever uses the sperm register with us and report conceptions and their outcomes to us. This allows us to track each vial used and give the intended mom access to our programs (such as Family Contact List and Identity-Release® Program) should she be successful. It also allows us to contact the mother should we have any need to in the future. The transaction between the two parties is up to them but we require written documentation from the original recipient that she has given or sold her vials to the other party.

Second, it is tricky if the donor has met his family limit. While we cannot prevent someone from physically transferring vials to another party, we do ask that women consider how they would feel if another family distributed vials from their donor who was at his limit. We work very hard to track all of our outcomes and limit our donors to 10 families and ask that families that work with this respect this limit. [Mikki's note: if all 10 families shared their vials with just one other family, you now have 20 families using the same donor, which defeats the purpose of TSBCA's tight control on donor usage.]

CLI/Fairfax (Amy): Clients who have vials stored at a CLI facility can transfer storage to another person using CLI documentation. The original owner needs to release ownership and the new owner and the new owner needs to accept the ownership and complete a storage/billing

as always, welcome to the discussion, and welcome to the journey

agreement. It isn't that common, but we do assist with this ownership change. There is an administrative fee. We have found that clinics will not perform inseminations unless the recipient name is on the packing slip, so we commonly need to go through the ownership change. The clients would work out a money change for the vial(s) on their own without Cryobank involvement. We also work with a vendor that provides financing, which could be helpful for this client.

Cryos International (Ty): We have a refund policy of 75% of the purchase price of the unused units currently stored at our facility. I am not sure if a client would sell specimens at a discount less than what she would receive back from us. However, there are issues where specimens have been shipped to clinics, and clients will contact me to see if we know of anyone interested in purchasing the units. Cryos NY has the policy that, after specimens are shipped, they cannot be returned to be put back in for general sale. However, there may be an opportunity to have these specimens made available to clients looking for specimens at a cheaper price.

So, that's the word from the sperm banks I consulted. Some good food for thought, and suggestions.

As always, visit the “donor conception” and “sperm bank” keywords on ChoiceMoms.org for up-to-date tips and expert insight. Use the Comments fields there to pose more questions you’d like answered.

Note that this Choice Mom Guide will be updated. It is currently a complimentary e-book for the Choice Mom community, thanks to our partners who recognize the value in providing support to Choice Moms LLC educational resources.

as always, welcome to the discussion, and welcome to the journey

LINKS TO RELATED STORIES ONLY ON CHOICEMOMS.ORG

Understanding sperm count

Getting a sperm bank refund

One non-profit bank’s guide to picking a sperm bank

How they do it in pioneering Australia

Diana: Stuck in the Thinking Phase (Part 1)

My Bumpy Road to Motherhood

Jenn: My Waiting Journal, Day 1-14

Kenzie: My DIY insemination

My Life as an Egg Donor

Finding Help in the TTC Process

Proving My Child’s Father was a Donor

OTHERS IN THE CHOICE MOM E-BOOK SERIES

Choice of Choice 2010: Profiles

Choice of Choice 2010: a ‘best of’ compilation of insight and tips from ChoiceMoms.org

ANOTHER RESOURCE FROM CHOICE MOMS FOUNDERBook: Voices of Donor Conception

as always, welcome to the discussion, and welcome to the journey