Kumbaya, my Lord
Well, lookie here: Nature seems to have jumped on the PGP bandwagon:
Technology development guru George Church — aka the information exhibitionist — is playing a salutary social role with his Personal Genome Project. Church is in the process of gathering phenotypic data and sequencing portions of the genomes of ten volunteers, including himself (see page 763). He intends to study how the genes of these people — all but one of whom have revealed their identities — influence their phenotypes, and to make those data public. Church’s point is simple: information, including genetic information, can and should be freely available.
Whether or not one agrees with him, society had better be ready to deal with the results of such research, which is occurring against a background of explosive growth in the availability of genetic information.
The rest of the piece goes on to rightly excoriate Senator Tom Coburn (R-OK), a practicing obstetrician*, for singlehandedly putting the kibosh on GINA.
*What in Hippocrates’ name is up with these physician-legislators? Dr. Ron Paul is one of three (!!!) Representatives to vote against GINA versus 420 in favor! And remember Bill Frist and Terri Schiavo? Physician, heal thyself.
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."
February 13th, 2008 at 9:27 pm
Coburn is no one to mess with, he has a hold on The ALS Registry act S.1382. ALS patients nation wide are being held hostage on Capitol Hill by Doctor / Senator from Oklahoma. Held by senate trickery this legislation would authorize the establishment of an ALS Registry at the Centers for Disease Control and Prevention. The House of Representatives passed the bill on Oct.16, 2007 by an overwhelming 411-3 vote. The Senate H.E.L.P. Committee favorably reported the Senate version of the bill on Nov. 14, 2007 and more than two-thirds of the Senate has cosponsored the bill. The ALS Registry Act is needed to build on projects underway in three test cities and is supported even the Administration. No explanation yet by Dr. No but he had time to endorse McCain.
February 23rd, 2008 at 3:39 am
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