Guest Post: An Education in ‘Re-identification’: Learning From the Personal Genome Project | The DNA Exchange
‘Re-identification’: Learning From the Personal Genome Project
By LEILA JAMAL, ScM
Leila Jamal is a genetic counselor in pediatric neurology and a PhD student in Bioethics and Health Policy. The views expressed here are hers and hers only.
As many are now aware, Latanya Sweeney and her colleagues at Harvard’s Data Privacy Lab recently published a study demonstrating the individual “re-identifiability” of research participants in the Personal Genome Project (PGP). Despite misleading news coverage overstating the proportion of individuals Sweeney’s team re-identified (using self-reported birthdates, genders, and zip codes) the study has sparked some useful discussions about the implications of ‘re-identifiability’ for genomic research and the ethics of re-identification demonstrations. For a comprehensive roundup of these issues, I recommend reading a series of perspectives corralled by Michelle N. Meyer in her Online Re-Identification Symposium over at the Petrie-Flom Center’s Bill of Health. This post will not match the breadth and depth of insight covered by my friends and colleagues there. My more modest aim is to contemplate what genomic researchers and counselors can learn from the ripple effects of Sweeney’s study.
Leila Jamal is a genetic counselor in pediatric neurology and a PhD student in Bioethics and Health Policy. The views expressed here are hers and hers only.
As many are now aware, Latanya Sweeney and her colleagues at Harvard’s Data Privacy Lab recently published a study demonstrating the individual “re-identifiability” of research participants in the Personal Genome Project (PGP). Despite misleading news coverage overstating the proportion of individuals Sweeney’s team re-identified (using self-reported birthdates, genders, and zip codes) the study has sparked some useful discussions about the implications of ‘re-identifiability’ for genomic research and the ethics of re-identification demonstrations. For a comprehensive roundup of these issues, I recommend reading a series of perspectives corralled by Michelle N. Meyer in her Online Re-Identification Symposium over at the Petrie-Flom Center’s Bill of Health. This post will not match the breadth and depth of insight covered by my friends and colleagues there. My more modest aim is to contemplate what genomic researchers and counselors can learn from the ripple effects of Sweeney’s study.
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