Sunday, April 26, 2009

Research and Genes

So the Personal Genome Project has posted data from the first ten volunteers, and will soon be enrolling the next 100 (of an eventual 100,000).

The site reports that interest is high, but if you're intrigued, you too can register and receive recruitment information when available. At this time, participants must visit "a medical center in Boston" (possibly Boston Medical Center!--they don't say) at their own expense, so if you live in Nome, Alaska, or one of the numerous other places located far away from Boston, take that into account.

Me, I'm curious, and interested in the advancement of scientific learning, and what with my precious, precious red hair genes I am also thoroughly convinced of the value of my genetic code, so I'll be thinking about it.

I would also like to highlight Harvard's extremely thorough approach to informed consent, which involves actually passing a test to ensure that you understand something about genetic material, gene transmission, expression and regulation, genetics and society, and the project. It's hard core. They've got a study guide and everything!

I've taken part in a variety of research studies, and have always had to read the forms and been given a chance to ask questions, but I've never had to pass a test. The closest thing was once when someone asked if I could explain in my own words what the project was about. (I couldn't explain it now, it was years ago, but at the time I was all over it. You better believe my consent was informed.)

Anyhow, I think this is an interesting approach, and serves to really emphasize both the potential value of the research, and the importance of the choice participants make to be involved. Putting this level of personal information on the web for all to see is not something to do casually.

Or maybe it is, these days. Excuse me while I go Twitter an update about my genetic code.


1 comment:

erinserb said...

hmmmm, I read about this at Genetic Future blog, but I didn't realize you have to come to Boston - anyway, does curly hair count for a bizarre genome? or just a common genetic quirk :-)