I was pretty intrigued by this brief notice I saw on GenomeWeb:
GPPC to Hold Touring Town Halls on Large-Scale Cohort Studies
The National Human Genome Research Institute wants to know how to get thousands of Americans from a wide swath of social, regional, economical, and ethnic groups to participate in a series of public meetings related to a proposed large cohort study on the role of genes and environment in health.
I would be interested in attending something like this to see what’s going on, and to hear what the public thinks about this. But none of them are near me. Cities listed are: Kansas City, Mo.; Jackson, Miss.; Middletown and Philadelphia, Pa.; Phoenix Ariz.; and Portland, Oregon.
I would also attend to raise awareness of an issue that makes me nuts–that we have been unable to move the GINA legislation forward for so so long. The NYT did a pretty nice article this week about the issues surrounding genetic privacy IRL–in real life–today. Of course, Congress already heard this in testimony from Francis Collins and people who are affected by this now. This is only going to increase as more genes are linked to disease, and that data is growing very quickly.
The town hall events will be held on March 8 in Kansas City, MO; April 5 in Phoenix, AZ; April 19 in Jackson, MS; April 24 in Portland, OR; and May 13 in Philadelphia, PA. Members of the public can register to attend by calling Erin Wiley at (202) 374-0840 or online.
Their notice links to a bit more info on the content (biobanks seem emphasized) and you can register.
I would love to hear any reports from these meetings when they really happen. I was hoping the Philly one would overlap with a training we are doing in Philly, but it doesn’t….hmm….