A few weeks ago the Genetic Genealogist gave us a lively summary of the issues raised by this paper from Stanford’s Hank Greely. If you haven’t seen it, I think it’s probably as damning an indictment of current practice regarding human genetic research subject confidentiality and anonymity as you’ll ever read.
The current Nature Genetics features a commentary from the GAIN Collaborative Research Group (a public-private consortium of investigators carrying out genome-wide disease association studies) that offers a rather different perspective. Dig the disconnect:
“Investigators granted access to GAIN data should ensure confidentiality of study participants and follow any limitations specified by their informed consent.”
“…plans for a Genome-Wide Association Studies database by the [NIH] illegally and unethically strip people of the legal status of human subjects…blanket consent, although extremely convenient for genomic biobanks, is both ethically and legally suspect.”
“Individual participant data will be kept secure and will not be distributed.”
“…patient identity is not, and cannot be, effectively protected in large-scale genomic biobanks.”
“Data will not be used to identify or contact individual participants from any GAIN study.”
“…the result of anonymizing data is not only nearly useless, but is itself unethical…”
“…biomedical research, including genomic biobanks, has a moral obligation, now almost always evaded, to inform research subjects of clinically significant information.”
I don’t see a Kumbaya moment happening anytime soon.