If you’ll excuse me for stretching an analogy to its limit, some of what we discussed at the Direct-to-Consumer Genetic Testing workshop today felt like closing the genetic barn door after all the information has escaped.
The presentations were interesting, the ones I understood fully (in some cases the science was tough for me) seemed to be right on target, and in many cases the speakers added a lot of context to my own experience with DTC Genetic Testing.
But I couldn’t help feeling that it was too late – at least in the case of broad, commercially available tests such as those from deCODE, 23andME or Navigenics.

These tests can be purchased on the Internet and there is 3rd party software (Promethease) and data (SNPedia) to help you understand the results. Once you’ve decided to do have a test done, there are Facebook groups, blogs, and people who Twitter about their experience to share the moment with and the whole phenomenon has been featured in Wired, NY Times, GQ, and Vogue. Add all this up, and any talk about the pros and cons of testing and what regulations are appropriate seems to be somewhat out of step.
 
What was a common theme to the discussion however, and what I’ve certainly learned over the last few months is that the information you get from many of the tests is complicated and what we need is more consumer education.
Hurray for that thought.
 
Cheryl Shuman from the University of Toronto summed it up nicely by saying we ‘need to translate complicated risk info into comprehensible, relevant, and consistent language’ and use a ‘variety of delivery formats for consumers’. Workshops like this have terrfic potential to look at where consumers are confused or need more direction, and then come up with ways to help those consumers make informed decisions.
There is still some advice to be passed on to regulatory bodies because as the discussion around David Castle’s (University of Ottawa) presentation noted, a regulatory environment that is clearly defined and stable will make the situation better for consumers and for the industry. Even that may be too much of an after-the-fact approach to be really effective.

I’m looking forward to Day Two of the workshop because it will specifically address communication and education tools for direct-to-consumer genetic tests. It is a multi-disciplinary bunch who aren’t shy so I expect to hear some good ideas.

BTW if you'd like a list of companies involved in various aspects of DTC consumer companies you can find one at http://www.dnapolicy.org/resources/DTCcompanieslist.pdf