Health NewsBudget 2009 Reaction
It is tough to be the Communications guy sometimes. When the Federal Budget came down on Tuesday I was in Toronto and didn't get a chance to look it over until the next day. No mention of our umbrella organization Genome Canada receiving any funding. Hmmm... not good. Then on Thursday while driving in to the office what should I hear but a report on the radio about the lack of funding, followed soon after by a phone call from a radio station. By the time I got into the office I realised there were some newspaper stories to read as well.
What to do ?
Fortunately my years in the media kept panic at bay. The other thing that experience taught me was that once it was on the front page of the Globe it was a story no matter what anyone else thought or what the facts of the matter really may be. Time to turn the tables on this one.
Field Notes on DTC Genetic Testing
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.
Genetic Testing and You
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.
Find your perfect mate through genetic testing?
Activate your unused DNA ? ( only $100.00 per session ! ) Honest - they're out there.
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 21st Century biology while shying away from 21st 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.
Direct-to-Consumer Genetic Testing Workshop
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.
2009 - Celebrating Significant Science
This year, 2009 is a year that marks many significant anniversaries, birthdays and celebrations. Perhaps every year has some significance and it is just that this one is standing out for me because my interests in science are all in conjunction with the events marked this year. Stay with me now and I will connect it all to the current research in Genomics.
The Drunkard’s Walk – a great review of statistics.
A couple of Biology curricula ago, there was a small segment – one learning experience – devoted to probability. This particular lesson involved students learning the difference between the inferred ratios and observed ratios. Clearly this is an area that should allow and encourage cross-curricula study.
Genome Kit Available for Alberta Teachers
From March to September of 2008, the Gee in Genome exhibit travelled through Alberta. Many students and teachers had the opportunity to see visit this display when it come through our province. I described this in some detail in a previous blog posting.
Well, considerably smaller than two semi-trucks full, Genome Alberta is pleased to make available a special kit available to Alberta teachers. Many dates are still available from late February onward.
Click here for a preview.