They said, they said
For those few of you who are not regular readers of the European Journal of Clinical Investigation, I call your attention to the current issue. It features a debate between those who believe genetic risk information ought to be available to anyone with $985 who wants it, and paternalistic men in white coats defending the status quo those who believe it ought to be vetted by randomized clinical trials.
The man who knows the nature of his disease is more likely to seek appropriate help to treat it and by the same logic, a man who knows the risk he has of developing a disease is more likely to seek help to mitigate the risk. It is also important to recognize that by learning about the genetic risk you have of diseases, you are simply learning certain aspects about who you are.
If [randomized clinical trial] data are considered necessary to understand benefits vs. harms for a particular application, then so be it…RCTs may be needed indeed, unless we can be satisfied that the new test detects the same spectrum and subtype of disease as the old test and that intervention response is similar across the spectrum of disease [27]. These principles need to be applied, on a case-by-case basis, to personal genomic tests.
Okay then. We’ll see y’all in about eight years.
(Hat tip: Dana Waring)
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."
January 6th, 2010 at 8:38 pm
[…] genomeboy.com | They said, they said genomeboy.com/2010/01/05/they-said-they-said – view page – cached For those few of you who are not regular readers of the European Journal of Clinical Investigation, I call your attention to the current issue. It features a debate between those who believe genetic risk information ought to be available to anyone [DEL: with $985 :DEL] who wants it, and [DEL: paternalistic men in white coats defending the status quo :DEL] those who believe it ought to be vetted… Read moreFor those few of you who are not regular readers of the European Journal of Clinical Investigation, I call your attention to the current issue. It features a debate between those who believe genetic risk information ought to be available to anyone [DEL: with $985 :DEL] who wants it, and [DEL: paternalistic men in white coats defending the status quo :DEL] those who believe it ought to be vetted by randomized clinical trials. View page […]