Tag Archives: GPPC

"Genetic Town Halls" report is available

I’m very interested in public policy and genetics. There are a number of threads that I was following along those lines. On the actual legislation I was watching the GINA efforts, and participating where I could. I was reading an article on the downstream effects of that today (Two Cheers for GINA, by McGuire and Majumder, Genome Med 2009, 1:6 doi:10.1186/gm6).  One sentence sums up my feeling on GINA–we absolutely needed some protection, but other problems in our health care and insurance systems will persist…

If significant sections of the public focus on these gaps in US policy, reluctant to enter the genomic era without a blanket guarantee against harm, GINA may fail to live up to the hopes of its supporters.

There was also a series of public meetings about biobanking and genetics research that I was following (Town hall meetings on genes + environment studies).  I wish I could have participated in these town halls to get a sense of the room full of people interested in this topic–but none of them were near me.  However, the report on these was just released and you can get the summary of the outcomes from the sessions:

Center releases report on genetic town hall series

….Most participants felt that the biobank should go forward, and more than half indicated they were likely to participate in it if asked. Among the issues participants weighed in on were privacy protections for participants and concerns about possible misuse of information collected, the nature of the proposed study’s consent agreement, and the ability to get individual research results back from the study….

If you go to the DNApolicy.org site you can download the report in PDF form.  It is clear that the participants were concerned about discrimination based on the information–especially by insurers, but also law enforcement.  And this is despite the passage of GINA during this timeframe.  There are privacy concerns in general, too.  And the potential for misuse for “nefarious” purposes.  They also saw the benefits–research and new knowledge, new medications, increased precision for treatments.

Thanks to the Genetics & Public Policy Center folks for the report.  Thanks to the Genetic Alliance Policy Bulletin mailing list for the heads-up.

Town hall meetings on genes + environment studies

dna1.jpgI 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.

But I wanted to know more about these town halls. It appears to be Genetics and Public Policy Center, out of Johns Hopkins. Their notice on these meetings is available, and you can register:

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….