GINA redux
An op-ed I wrote with Bob Cook-Deegan on the imminent passage (we hope!) of GINA into law appears in the Oakland Tribune:
…people fear genetic discrimination, which is what makes this new law so historic. In a recent survey, the Genetics and Public Policy Center found that 92 percent of respondents worried that genetic tests could be used in ways that are harmful to those getting tested. Only one in four said they would trust insurers with access to their genetic test results. Just one in six would trust employers.
The consequences of such fear, whether well-founded or not, could be grave. If people at risk for inherited diseases are unwilling to undergo genetic testing, they forego information of potentially immense importance to their lives. And if that same mistrust prevents citizens from participating in genetic and genomic research, the process by which our society develops new medicines and cures will suffer. Therefore, if GINA serves as nothing more than a reassuring symbol to a skittish public, it’s still well worth the price of the occasional lawsuit.
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."
May 28th, 2008 at 12:04 am
Surely this is about more than just a skittish public that won’t want to use the new screening services. Of course people are going to be worried, but I don’t think those concerns are well-founded. The Neo-eugenics fears that are behind GINA just won’t come to pass, because there’s no real incentive. Insurance companies would keep taking people’s money, because the actual rates of claims wouldn’t change. Companies can’t make hiring decisions based on it, because there’s no indication when the risk will turn into a reality.
Do you think more people will avoid testing because they’re concerned about privacy or because they’d have to pay out of pocket? I’d bet the latter, and GINA pretty much torpedoed any chance of having this kind of screening covered, hasn’t it?