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9 Volunteers in Harvard Study Agree to Post Their Personal Genomes Online

October 20, 2008

Nine of the first 10 participants in a genetic study at Harvard Medical School, who include some well-known researchers, have agreed to post newly decoded segments of their DNA sequences and other medical information on a publicly accessible Web site, the group announced at a news conference at the school today.

The Personal Genome Project, as the study is known, is being led by George M. Church, a geneticist who is also among the first participants (the “PGP-10”). The project aims to build database of decoded DNA of 100,000 volunteers and make the information available online as a tool to investigate “the genetic basis of diseases and other traits,” according to a news release. The volunteers control who can see the information in their personal profiles, choosing among three levels of access: to themselves and a small number of researchers only, to researchers generally, or to anyone with Internet access.

After consultations with a physician and with relatives, most of the PGP-10 decided that the public service of releasing their personal information to all outweighed any privacy issues. Only one — Misha Angrist, a science editor at the Duke University Institute for Genome Sciences and Policy — decided to wait to review his DNA sequence before releasing it to the public. Mr. Angrist will, however, release his health records and other data.

Mr. Church said that the current data are preliminary and that each of the PGP-10 will receive updated information along the way and can choose whether to make that data public. Participants said none of the information they have learned so far was startling.

Critics of the project say that making such personal information public could create problems between participants and their employers or insurance providers. Kathy Hudson, director of the Genetics and Public Policy Center at the Johns Hopkins University, said her research has found that people want information about diseases they may be predisposed to. She has reservations, however, about making such information public. “I think Dr. Church is pressing the envelope and asking hard questions on whether we have become ‘privacy prudes,’” Ms. Hudson said. But ultimately, she said, “research is to maximize benefits for participants and minimize risk.” —David DeBolt