Genome Sequences, Consent, and Scientist Ethics

What...you don't trust this guy???

Few things are scarier than when scientists start debating ethics.

A current debate in the scientific community involves whether it is ethical to publish your genome sequence without asking permission from family members. It is increasingly common for people to pay to have their genome scanned for the presence of traits, including genetic diseases. Scientists agree that releasing this information without the permission of the individual whose genes are described would be a clear ethical breach. The controversy involves whether an individual is ethically obligated to get consent from family members before publishing his or her own genome sequence, since to some extent that means publishing theirs as well.

The argument proceeds from the unauthorized release of someone’s genome sequence by a third party to the plight of an identical twin whose sibling wants to publish his own sequence, which, of course, also describes his twin’s.  This is ethically clear too: it would be wrong not to seek permission. But what about the rest of the family? Continue reading