The Toronto workshop on direct-to-consumer genetic testing wound up yesterday, and chairman Tim Caulfield and the participants spent some time pulling together a few threads coming out of the 2 days.
We covered a lot of ground in a very short period of time. The speakers kept to their time limit and the session leaders did an amazing job of keeping the discussion focused. Not at all like some PR workshops that I've attended that dance into never-never land before you know it.  
That made the job of developing recommendations and possibly paper for publication a somewhat daunting task. 
I was posting as fast as I could to Twitter (#genetic if you want to search ) and from those notes here are  some of the main points that you'll probably be hearing more about over the coming months.

For a start the workshop was all about Canada. The Canadian context for DTC genetic testing is unique. There are no Canadian players in the marketplace, our health care system is a public one compared to the private U.S. model,we're heavily influenced by companies and events outside the country, there are bound to be cross-border issues when it comes to regulation, and though there may not be hard numbers to back it up, I would suggest there are considerably fewer Canadian consumers interested in the issue right now.

The people attending the workshop covered a cross-section of genetic testing. There were academics, bureaucrats, ethicists, doctors, geneticists, and lawyers. They were all in agreement that whether you're North or South of the 49^th parallel you'll find there is a lot of work yet to be done around the actual direct-to-consumer test . There is lots of speculation about potential benefits and harms to individual  consumers ordering their own tests but not a lot of empirical evidence to go with it. There are more studies needed on the  clinical validity and utility of testing and there is no clear answers on where tests fit on the continuum between clear health value and little or no value.

Though consumers were definitely under-represented at the workshop some of the participants did try to think like a consumer and Wendy Armstrong from the Consumers' Association tried to nudge more of them in that direction. Many consumers see genetic testing as being highly scientific in nature so assume a certain level of accuracy that may in fact not be there. The same respect for the science leads the public to place a higher health value on the information than may be warranted, and even where there are concerns around privacy issues, users also assume a level of regulation is in place. Ms. Armstrong encouraged the group to involve consumers much earlier on in the process of developing recommendations, but as you'll often find at science meetings there tends to be some pushback.
Consumers after all, aren't equipped to understand the complexities.

Which at least was another point everyone agreed was something needing more investigation and maybe even a plan of action. DTC genetic tests provide information that can't be interpreted easily by someone sitting at home in their kitchen. One of the participants compared it to a home pregnancy test which most of the time gives a pretty clear answer. Not so when your genetic report arrives. There is no blue strip saying you have the gene ! The Canadian health care system simply does not have the capacity to take this on. We heard from health care officials, dieticians, and genetic counselors who had not hesitation in saying that we do not have the numbers, the training, or the time to deal with consumers (or are the patients?) who come with genetic testing results and want answers and clinical or diagnostic tests.

Right now there is a vacuum in Canada that in an odd kind of way may work to our favour. It was a strange thought for some people to wrap their head around but it created an interesting discussion. We can learn from what has gone on in the U.S. and the U.K. ,which gives us a chance to get it right first time around. We can actually plan a regulatory, ethical, and education framework for consumers to have confidence when shopping for genetic tests. It also means that if we could create a clear, concise and stable environment for the genetic testing marketplace maybe we could actually attract some new genomics investment in a variety of related areas.

Lots of agreement and lots of good idea to which I'll add my own final points.

The tests - good and bad -  are out there now. While sitting in the meeting room I could have ordered a variety of tests over the 'net (spit to follow of course), and while we were still talking about what to do next I received an e-mail asking me to take part in a U.S based study to look at consumer attitudes to genetic testing and an offer from a strange little website offering me a complete report on the genetic tests I should be considering. Is anything we discussed or may recommend going to turn back the clock or find a way to make sense of all this ? We may have to take planning to a whole new level of creativity and grassroutes work that scientists and researchers are not usually comfortable with.
Finally there was lots of talk about the paper to be produced and the next steps. I certainly am not the one to produce a peer-reviewed science paper but over the last 72 hours I sent out nearly 100 Tweets, posted several Facebook entries and 3 blogs. The discussion has been out there for some time now and the workshop notes have been set free. 
Time to pick up the pace kids.