Change is hard
Genetic Future (about which I can’t say enough good things) points to Jennifer Couzin’s Science article on genetic risk:
Some concerns about the public’s reaction have already eased. Two years ago, behavioral epidemiologist Colleen McBride and human geneticist Lawrence Brody, both at the National Human Genome Research Institute, began examining how healthy individuals respond to disease risk information. They offered volunteers in Detroit, Michigan, the chance to learn whether they carried deleterious variants for eight health conditions, including diabetes, colon cancer, and osteoporosis. Because the variants are common, virtually everyone was expected to harbor at least a couple. Those monitoring the study’s safety “were really worried, literally, that people were going to jump off bridges” when they learned that their risk of disease was increased, says McBride.
Among the 300 or so who have participated, that hasn’t happened–quite the opposite. “They’re not having big emotional responses,” says McBride.
If that’s true–as it appears to be in Alzheimer’s as well–then how does that jibe with the “people-will-freak-out-if-you-tell-them-so-don’t” argument?
I work as an Assistant Professor in the Duke University Institute for Genome Sciences & Policy (although this site and its content are my own).
In 2007 I became the fourth subject in Harvard geneticist George Church's Personal Genome Project. As the PGP moves forward, I am chronicling the dawn of personal genomics, that is, people obtaining their genomic information for whatever reason(s) and figuring out what to do with it. I am interested in the relevant technologies and especially the attendant privacy and other ethical/legal/social issues.
This blog may also discuss some of my non-genome interests or, to paraphrase Dwight Yoakam, "Guitars, Cadillacs, hillbilly music, etc etc."
The header image comes from the Liz Lerman Dance Exchange's multimedia performance piece, "Ferocious Beauty: Genome."
April 2nd, 2008 at 12:46 am
Thanks for pointing out the Couzin’s article. I have been reading up on the psychological impact of genetic testing, and most of what I have been finding supports this argument - that people don’t tend to have terrible reactions to their genetic results, even if the news is “bad”. Mostly the responses seem to be relief (sometimes after a few months time so people can process the news) or sort of a non-reaction.
My guess is that until recently, most people getting predictive genetic testing generally had a reason to suspect they were at risk of a certain disease because of family history. While learning one has a mutation that has caused illness to a family member is surely very painful in many ways, I don’t imagine it’s an “out of the blue” kind of shock. And in many cases, genetic testing doesn’t always motivate people to change their habits - although the REVEAL study is one of the first to show that yes, some people will find positive and practical ways to take action.
Who is studying the emotional and psychological impact personal genome sequencing has on the PGP 10 (and surely many more to come..)?
April 2nd, 2008 at 2:09 pm
Well, don’t worry!
I’m not going to do what you think I’m going to do, which is FLIP OUT! But let me just say………that there is such a thing as manners. A way of treating people… These fish have manners! They have manners. In fact. They’re coming with me!
-Jerry Maguire 1996
“Who’s coming with me?”
-Steve
www.thegenesherpa.blogspot.com
April 17th, 2008 at 11:49 am
[…] REVEAL study (by way of Genomeboy) modifies the picture slightly on the willingness to change lifestyle based on test results from […]