Personal genome

I'm fascinated by Geoge Church's personal genome project (the name recalls another PGP), in which one volunteers to have one's genome sequenced and made available for research. Personally, I think it's a great thing and I would be delighted to participate. I can't imagine caring if I (or the world) know that I have the gene for obsessive-compulsive disorder or whatever I may turn out to have. The one thing that gives me pause is wondering whether my children or siblings should have a say in whether I publish my genome, given that they share a fair bit of it. (I don't think my parents would mind.) The PGP web site doesn't discuss that issue, although it does point out other dangers that hadn't occurred to me, e.g.:

[someone might] make synthetic DNA corresponding to the participant and plant it at a crime scene

A quick search didn't reveal too many profound thoughts on this topic, just some recognition that if is an issue. E.g., from Baylor College of Medicine:

With [personal genomes] will come a host of legal and ethical issues, said Amy McGuire, J.D., Ph.D., Assistant Professor of Medicine in BCM's Center for Medical Ethics and Health Policy.

"Sequencing a personal genome possibly will reveal information about children, parents and siblings," she said. At present, there are no real standards as to what control family members can have over sequencing of an individual's genome or its release.

And some thoughts on the opposite dimension--a physician's "duty to warn.'

Comments

[Jason Bobe]

Hi Ian -

A few other places to look regarding family members and the PGP is the informed consent document. Here are a few snippets:

[Page 7]"We encourage you to discuss this study and the potential risks, as outlined below and on the project website, with your immediate family members...The risks of public disclosure of your genotype and phenotype information could affect employment, insurance, financial well-being, and social interactions for you and your immediate family. You should also be aware of the ways in which knowledge of your genotype and phenotype might be used. For example, anyone with sufficient knowledge could take your genome and/or posted medical information and use them to...(3) claim relatedness to criminals or incriminate relatives..."

http://arep.med.harvard.edu/PGP/Consent08/PG_Consent_15Apr2008.pdf

Our policy, approved through the Harvard IRB, is to strongly encourage volunteers to discuss the PGP with family members prior to enrollment. Only in the case of identical twins, do we require additional consent. That is to say, if a volunteer has an identical twin, both twins need to consent in order for one twin to participate in the project.

One area which needs special consideration in terms of consent, in my opinion, is family medical history. Is it OK for an individual, in the PGP or otherwise, to (publicly) describe the medical conditions of specific family members without their consent? The PGP has some ideas about how to tackle this area, and we hope over the next few years, we can develop best practices.

Thanks,
Jason