A complexity complex
In April 1986 Nancy Wexler appeared on 60 Minutes to talk about Huntington’s. “I’ve always believed in knowledge for its own sake,” she said. “And it is ironic that after working for precisely that, I’m finding it much more complex than I ever thought it would be.”***
Speaking once again on CBS in 2004, [Wexler] said, “I think there’s a huge amount of social pressure on people to get tested. I know that with me, if I were to go to bed every night thinking I’m going to die of Huntington’s, you know, why should I bother getting up?”
- From Blood Matters by Masha Gessen
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 1st, 2008 at 8:22 am
On this topic I am warmly recommending a paper by Kimberly A. Quaid et al. (http://www.springerlink.com/content/t1q6861702861466/fulltext.pdf) with interviews of many more huntington patients and family members. Same conclusion: hope is essential, but knowledge may not be.