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DNA Databases - Threat To Privacy Or A

Good Thing?

Saturday 13 July 2013 - 1am PSTGenetics

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DNA Databases - Treat To Pri!acy "r A Good Ting#

$reating uge national databases o% &eo&le's DNA is an increasingly contentious to&ic since

te (S Su&reme $ourt recentlybac)ed te routine s*abbing o% DNA %rom all criminal

sus&ects once tey are arrested - at te immediate stages o% in!estigation and be%ore any legal

&roceedings+

Te Fourt Amendment re,uires te (S go!ernment to balance legitimate la* en%orcement

interests *it te &ri!acy rigts o% indi!iduals+ en it comes to genetic %inger&rinting.

&eo&le *orry about o* sa%ely guarded teir DNA data is. as *ell as about te reliability o%

te in%ormation+

Similar concerns are otly debated in te medical *orld+ Te saring o% large amounts o%

DNA data can enable researcers to &redict and treat serious disease+ But woud you want

an insurer to gain access to your genetic bue!rint of !ersona disease ris"?

A ne* e/am&le o% *ere tere may be clear medical bene%its to *ides&read sam&ling o%

DNA is seen in researc againstAleimer's disease+

#$argest-ever# DNA database for a singe-disease !ro%ect

Today July 12t. te international con%erence %or te ('s Aleimer's Association. eld in

4or)sire. 5ngland. eard researcers claim tey ad gained *ole genome se,uences %or

te 6largest coort o% indi!iduals6 e!er grou&ed togeter %or a single disease - more tan 700

&eo&le+
http://www.medicalnewstoday.com/categories/genetics/http://www.medicalnewstoday.com/email-an-article/263323http://www.medicalnewstoday.com/articles/263323.php#ratehttp://edition.cnn.com/2013/06/03/justice/supreme-court-dna-testshttp://www.medicalnewstoday.com/articles/159442.phphttp://www.medicalnewstoday.com/articles/159442.phphttp://www.medicalnewstoday.com/email-an-article/263323http://www.medicalnewstoday.com/articles/263323.php#ratehttp://edition.cnn.com/2013/06/03/justice/supreme-court-dna-testshttp://www.medicalnewstoday.com/articles/159442.phphttp://www.medicalnewstoday.com/categories/genetics/


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Who should have access to your DNA?

5nrolled in te Aleimer's Disease Neuroimaging 8nitiati!eADN8. te genetic in%ormation

%rom tese &eo&le could be crucial %or te understanding and treatment o% tis common ty&e

o% dementia+

9ut o* sa%e is it to gi!e u& all your genetic in%ormation to medical researc# ell. in

medical researc studies. igly regulated etical &rotocols are in &lace tat aim to &re!ent

suc tings as abuse o% &ri!ate and con%idential data+

For te Aleimer's researc &ro:ect. anyone interested in enrolling in te study ad to gi!e

teir in%ormed consent. and te study doctors and scientists ad to abide by numerous

&rotocols set out in ad!ance+ Any &arties interested in gaining access to te resulting DNA

database must also agree to a number o% &rinci&les. including not as)ing any researcer to

someo* try and trac) do*n indi!idual DNA data+

&o' in (edica research' infor(ation fro( individua !eo!e)s DNA shouldbe safey

anony(i*ed so that anaysis is on a #big data# eve and cannot be dried down to

identifiabe individuas+

Tis is not al*ays te case. toug+ A &a&er &ublised in te :ournal Scienceby 4ani! 5rlic.

*o runs a lab at ;8T's iteead 8nstitute %or 9iomedical ?0 s&lit -te ma:ority o% &eo&le said yes to te ,uestion. 68s it e!er rigt %or te DNA o% te innocent to

be used %or any &ur&ose *itout te consent o% te 'o*ner+'6 Te debate. 6Te etics o% DNA

databasing6.centered on a motion tat 6Tis ouse belie!es tat &eo&le's DNA se,uences are

teir business. and nobody else's6+

ile it seems a ma:ority o% &eo&le are not too *orried about national DNA databases. a

large minority are seriously concerned+

ritten by ;ar)us ;acGill

Co!yright:;edical Ne*s TodayNot to be reproduced without the permission of Medical News Today.
http://www.adni-info.org/http://www.medicalnewstoday.com/articles/142214.phphttp://www.adni-info.org/Scientists/ADNIStudyProcedures.aspxhttp://www.adni-info.org/Scientists/ADNIStudyProcedures.aspxhttp://adni.loni.ucla.edu/wp-content/uploads/how_to_apply/ADNI_Data_Use_Agreement.pdfhttp://www.sciencemag.org/content/339/6117/262.summary?sid=4d50eb3a-b898-4739-b888-d0364bd50032http://www.sciencemag.org/content/339/6117/262.summary?sid=4d50eb3a-b898-4739-b888-d0364bd50032http://www.economist.com/debate/overview/141http://www.economist.com/debate/overview/141http://www.economist.com/debate/overview/141http://www.adni-info.org/http://www.medicalnewstoday.com/articles/142214.phphttp://www.adni-info.org/Scientists/ADNIStudyProcedures.aspxhttp://www.adni-info.org/Scientists/ADNIStudyProcedures.aspxhttp://adni.loni.ucla.edu/wp-content/uploads/how_to_apply/ADNI_Data_Use_Agreement.pdfhttp://www.sciencemag.org/content/339/6117/262.summary?sid=4d50eb3a-b898-4739-b888-d0364bd50032http://www.economist.com/debate/overview/141http://www.economist.com/debate/overview/141


3/5

Create a Nationa DNA Database?

T*itter

@in)edin

Sign 8n to 5-;ail

Print

Sare

Publised ;arc 1B. 2010

To te 5ditor

5nlarge Tis 8mage

Gracia @am


4/5

Finally. suc an e/&ansion *ould actually undermine la* en%orcement by si&oning a*ay

limited resources as it is. tey are straining under a bac)log created by current database

&ractices+

Jeremy Gruber

Ne* 4or). ;arc 1=. 2010

Te *riter is &resident o% te $ouncil %or


5/5

innocence is tat DNA &ro%iles sould be maintained only %or tose actually con!icted o%

crimes+

;i)e Iabersac)

@e/ington. y+. ;arc 1=. 2010

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