Private parts
Genetic Future summarizes the PGP POV on informed consent and genomic privacy. The crux of the Nature Reviews Genetics article (subscription only) is this:
Current developments in genomic technology challenge the traditional normative framework for biomedical research and its well-known components. It has become clear that the common interpretation of the concepts of privacy and confidentiality as being absolute or near absolute cannot be sustained. Whenever genetic samples are involved re-identification will be possible. Although the research community is well aware of the facts, until now this awareness has not been reflected in the language of consent. Therefore, in many cases, existing consent cannot be assumed to be fully valid.
Although I love him dearly, I think Steve has overstated what George Church is proposing with the PGP. No one I know of is advocating immediate wholesale abandonment of the current model; the idea is simply to begin to integrate other informed consent approaches into human genomic research. Of course, whether the powers that be buy into that notion is another matter.
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 20th, 2008 at 11:20 pm
Ok….I Love you too. Maybe it is a little more nuanced than that. I will post on it this week. I also will share what the DVPMP is doing for security. I think George’s model could work. So could the Suisse Banking Model. Both just needs some changes in the current environment (Governmental, Societal, Ethical) I like Dr Church and admire him…..I just am a little concerned. Simply because, people are private and keep secrets. I agree that nothing is truly safe….But you will not get participants unless you can give them the best assurances of some modicum of protection. Unless of course they are aware of the potential risks and benefits…or are as altruistic as you.
BTW…I admire you even more. Despite your proclivity for Navitinis
-Steve
www.thegenesherpa.blogspot.com
April 21st, 2008 at 4:46 pm
[…] Private parts at Genomeboy […]
April 21st, 2008 at 11:11 pm
Lets try for the 65 and older population. They can’t be descriminated against as far as insurance goes and they will have or may be about to have many of the conditions you are looking for.