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August 13, 2008

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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

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