DNA Databases - Threat To Privacy Or A Good Thing?

Saturday 13 July 2013 - 1am PST Genetics email Featured Article Add your rating Current ratings for: DNA Databases - T reat To Pri!acy "r A Good T ing# $reating uge national databases o% &eo&le's DNA is an increasingly contentious to&ic since t e (S Su&reme $ourt recently bac)ed t e routine s*abbing o% DNA %rom all criminal sus&ects once t ey are arrested - at t e immediate stages o% in!estigation and be%ore any legal &roceedings+ T e Fourt Amendment re,uires t e (S go!ernment to balance legitimate la* en%orcement interests *it t e &ri!acy rig ts o% indi!iduals+ - en it comes to genetic %inger&rinting. &eo&le *orry about o* sa%ely guarded t eir DNA data is. as *ell as about t e reliability o% t e in%ormation+ Similar concerns are otly debated in t e medical *orld+ T e s aring o% large amounts o% DNA data can enable researc ers to &redict and treat serious disease+ But wou d you want an insurer to gain access to your genetic b ue!rint of !ersona disease ris"? A ne* e/am&le o% * ere t ere may be clear medical bene%its to *ides&read sam&ling o% DNA is seen in researc against Al0 eimer's disease+

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

Today 1July 12t 2. t e international con%erence %or t e (3's Al0 eimer's Association. eld in 4or)s ire. 5ngland. eard researc ers claim t ey ad gained * ole genome se,uences %or t e 6largest co ort o% indi!iduals6 e!er grou&ed toget er %or a single disease - more t an 700 &eo&le+

Who should have access to your DNA? 5nrolled in t e Al0 eimer's Disease Neuroimaging 8nitiati!e 1ADN82. t e genetic in%ormation %rom t ese &eo&le could be crucial %or t e understanding and treatment o% t is 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. ig ly regulated et ical &rotocols are in &lace t at aim to &re!ent suc t ings as abuse o% &ri!ate and con%idential data+ For t e Al0 eimer's researc &ro:ect. anyone interested in enrolling in t e study ad to gi!e t eir in%ormed consent. and t e study doctors and scientists ad to abide by numerous &rotocols set out in ad!ance+ Any &arties interested in gaining access to t e resulting DNA database must also agree to a number o% &rinci&les. including not as)ing any researc er to some o* try and trac) do*n indi!idual DNA data+ &o' in (edica research' infor(ation fro( individua !eo! e)s DNA should be safe y anony(i*ed so that ana ysis is on a #big data# eve and cannot be dri ed down to identifiab e individua s+ T is is not al*ays t e case. t oug + A &a&er &ublis ed in t e :ournal Science by 4ani! 5rlic . * o runs a lab at ;8T's - ite ead 8nstitute %or 9iomedical <esearc . s o*s o* e managed to identi%y indi!iduals and t eir %amilies among anonymous DNA researc data+ So o* muc trust do &eo&le &lace in &olice and ot er &ublic aut orities to sa%eguard t e data on your genes# The Economist recently ran an online &oll and %ound a roug ly =0>?0 s&lit t e ma:ority o% &eo&le said yes to t e ,uestion. 68s it e!er rig t %or t e DNA o% t e innocent to be used %or any &ur&ose *it out t e consent o% t e 'o*ner+'6 T e debate. 6T e et ics o% DNA databasing6. centered on a motion t at 6T is ouse belie!es t at &eo&le's DNA se,uences are t eir 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 Today Not to be reproduced without the permission of Medical News Today.

Create a Nationa DNA Database?

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Gracia @am <e CTo Sto& $rime. S are 4our Genes.D by ;ic ael Sering aus 1"&-5d. ;arc 1E2A ;r+ Sering aus accurately details t e abuses t at a!e accom&anied t e ra&id e/&ansion o% %orensic DNA databases+ 9ut t ese are arguments %or res&onsible regulation. not an e/&ansion t at *ould turn America into a nation o% sus&ects+ Suc an idea is inconsistent *it a society t at !alues %reedom and indi!idual rig ts. not to mention t e &resum&tion o% innocence+ Furt ermore. t ere is no reason to belie!e t at current go!ernment &ractice to retain biological sam&les *ould c ange+ Suc sensiti!e in%ormation is &rone to misuse. and one s ould not a!e suc blind %ait in t e security o% go!ernment access to it+ ;oreo!er. basic statistics dictates t at randomly sam&ling %rom suc a large database *ill result in an increase in %alse matc es+

Finally. suc an e/&ansion *ould actually undermine la* en%orcement by si& oning a*ay limited resourcesF as it is. t ey are straining under a bac)log created by current database &ractices+ Jeremy Gruber Ne* 4or). ;arc 1=. 2010 T e *riter is &resident o% t e $ouncil %or <es&onsible Genetics+ G To t e 5ditorA ;ic ael Sering aus ma)es a con!incing argument t at a national database o% DNA &ro%iles *ould ser!e as an e/cellent la* en%orcement tool. bot %or increasing con!ictions o% %irsttime o%%enders and acting as a deterrent %or t ose considering crime+ Furt ermore. it remo!es t e stigma associated *it current databases t at s o* racial and class bias+ - ile e suggests t at it be used only %or serious crimes. 8 can en!ision t at it *ould become so con!incing t at it *ould become a gold standard and be routinely used * ene!er &ossible+ A matc to DNA *ould become &rima %acie e!idence o% guilt+ T e &roblem *it t is scenario is t at *it e/isting tec nology it is sim&le to co&y and am&li%y DNA %rom e!en a single cell %rom an indi!idual. say. %rom a comb or residual sali!a %rom a glass+ T is tec nology is routine and easily accessible+ T us. it *ould be sim&le to %alsely im&licate an innocent C%irst-time o%%enderD in a crime o% oneHs c oosing by &lacing am&li%ied DNA at a crime scene+ 9e care%ul * at you *is %or+ Ste& en 5lledge 9oston. ;arc 1E. 2010 T e *riter is a &ro%essor o% genetics and medicine at Iar!ard ;edical Sc ool and t e 9rig am and -omenHs Ios&ital+ G To t e 5ditorA ;ic ael Sering ausHs suggestion t at all &eo&le in t e (nited States submit DNA to t e &olice sacri%ices t e bedroc) %oundation o% &resum&tion o% innocence %or C%airness+D T is goes against more t an 200 years o% &ractice and &rinci&le in t e (nited States+ 8% %airness *ere more im&ortant. t en *e *ould a!e long ago re,uired all &eo&le to submit %inger&rints 1&resumably at birt 2 to t e &olice+ - y not go one ste& %urt er and re,uire closed-circuit cameras inside e!erybodyHs ome# -ould t at not el& t e &olice e!en %urt er in sol!ing crime and also being %air# T e &roblem *it t is logic is t at citi0ens do not e/ist to ser!e t e &olice. but rat er t e re!erse+ T e ob!ious ans*er t at ser!es bot %airness. :ustice and t e &resum&tion o%

innocence is t at DNA &ro%iles s ould be maintained only %or t ose actually con!icted o% crimes+ ;i)e Iabersac) @e/ington. 3y+. ;arc 1=. 2010