Today’s agenda at the workshop on direct-to-consumer genetic testing is an interesting one that includes several aspects where the science and research community do not generally shine.

For a start they have Wendy Armstrong from the Consumers Association of Canada. Wendy doesn’t seem to have a lot of experience around the issue of genetic testing but she does have strong health advocacy experience and any consumer perspective is a good start. She is also the only real consumer perspective over the 2 days.
As I wrote previously, genetic tests are easily available to individuals already and they aren’t likely to be clamouring for regulation and changes. In fact, if what I can glean from blogs is any indication there is actually a ‘hands off’ feeling. But consumers need protection from themselves every once in a while and Wendy has the background to help figure some of that out. 
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People can be pretty gullible, especially if the science is hard to understand, and maybe in these tough times desperate people will grasp at almost any promise of a better life.
Which leads to the second main theme of the morning and the other area where the science community needs some help. Communication and education.

Scientists are notoriously bad at both, seeming to have an aversion to simplification and are oddly willing to embrace 21^st Century biology while shying away from 21^st Century communication tools. Though there is an agenda heading on Communication and Education it is being led by neither. Bring on the scientists and lawyers instead. Good scientists and good lawyers mind you, but communication and outreach are not something that people do in their spare time – it should be a full time job.
One point that came out yesterday was that even without new rules or regulations there is legislation in place covering truth in advertising, false claims, accuracy etc. but that in some cases it will take litigation to bring the rigour to bear on genetic testing claims. If consumers understood the science, if science journalists could cut through the hype, and regulators could get past some knee jerk reaction maybe, just maybe, some of the wilder genetic services would disappear in the night and some of the more responsible ones would rise to the top. It couldn’t help but bring more credibility and a better discussion around all aspects of genetic testing.

It will be an interesting morning.