ASHG 2008: A stance, more or less, on genetic ancestry testing
ASHG released recommendations today about how researchers and direct to consumer companies should treat the sometimes fraught area of genetic ancestry testing. Although a seemingly innocuous area both for research and for consumer products, ancestry testing does carry with it tricky ethical, legal and social issues when one considers how people might treat such data. I did a quick Q&A with Charmaine Royal of Duke University, who co-chaired the task force on the topic (find it here).
At the press briefing today, announcing the recommendations, I got to talk briefly with Joanna Mountain, senior director of research at 23andMe, one of the companies providing such tests.
She said the recommendations were provocative, but vague. Why, she asked, if they were going to make a big deal about how people might try to use ancestry tests to claim rights in affirmative action or for inclusion into specific groups, did they fail to provide any actual policy recommendations? Royal indicated to me that they’ve just begun to scratch the surface, here. Interestingly, Native American groups are keenly aware of the issues and will not allow identification with a particular tribe based simply on a genetic test, at least that’s what I’d heard at a session yesterday on the topic.
It is important to note that ASHG’s recommendations (you can find them here) were aimed both at academic researchers and those at direct to consumer companies. Mountain says, though, that 23andMe hadn’t been contacted and she suspects the task force hadn’t consulted with any of the companies. But as Royal said, there’s still a lot to be done including consulting with a broader swath of interested parties.
