Public Access to Genome-Wide Data Five Views on Balancing Research with Privacy and Protection 英文参考文献.docVIP

Viewpoints PublicAccesstoGenome-WideData:FiveViewson BalancingResearchwithPrivacyandProtection P3GConsortium*,GeorgeChurch1*,CatherineHeeney2*,NaomiHawkins2,JantinadeVries2 ,Paula Boddington2,JaneKaye2,MartinBobrow3*,BruceWeir4* 1DepartmentofGenetics,HarvardMedicalSchool,Cambridge,Massachusetts,UnitedStatesofAmerica,2TheEthoxCentre,DepartmentofPublicHealthandPrimary Care, University of Oxford, Oxford, United Kingdom, 3Department of Medical Genetics, University of Cambridge, Cambridge, United Kingdom, 4Department of Biostatistics,UniversityofWashington,Seattle,Washington,UnitedStatesofAmerica IntroductionbyGregGibson andElizabethFisher research. George Church posits that DNA mixture including up to 1,000 participants. Although in hindsight it is clear that basic statistical theory would predict this to be the case, the reality is that it had previously gone completely unrecognised. actions directed toward restricting data access are likely to exclude researchers whomightprovidethemostnovelinsights into the data and instead makes the argument that full disclosure and consent to the release of genomic information should be sought from study participants, rather than making difficult-to-guarantee promises of anonymity. Martin Bobrow weighstherisksandbenefitsandproposes fourstepsthatrepresentamiddleground: Retain restricted access for now, make malicious de-identification practices ille- gal,increasepublicawarenessoftheissues, and encourage recognition that scientists have a special professional relationship of Just over twelve months ago, PLoS Geneticspublishedapaper[1]demonstrat- ing that, given genome-wide genotype datafromanindividual,itis,inprinciple, possibletoascertainwhetherthatindivid- ualisamemberofalargergroupdefined solely by aggregate genotype frequencies, such as a forensic sample or a cohort of participantsinagenome-wideassociation study (GWAS). As a consequence, the National Institutes of Health (NIH) and Wellcome Trust agreed to shut down public