Earlier this year Yaniv Erlich of the Massachusetts Institute of Technology sent bioethicists into a frenzy when he and his team uncovered the names of people whose anonymous genome profiles were published by the 1000 Genomes Project. Erlich and his co-workers found the identities entirely by connecting Y-chromosome data and other information from the database with publicly available records.
The reality is that genome researchers have no clear model to follow for how best to protect the privacy of genetic donors. Some researchers have accepted that privacy is impractical, even impossible. Most investigators say that a solution to the privacy conundrum is offering subjects a choice about how much protection they get.
Read the full, original story here: Unhidden Traits: Genomic Data Privacy Debates Heat Up
- Personal Genome Project
The Personal Genome Project, led by geneticist George Church, hopes to attract 100,000 people who want to freely share their genomic, demographic and medical data with the world.
- “Poking Holes in Genetic Privacy,” New York TimesThis New York Times article covers Yaniv Erlich’s work, from January 2013, in context of the push to consolidate the world’s genetic databases, in June of 2013.