Archive for April, 2008
A momentous hump day
Two items of note:
- First, Dr. No has apparently said yes and so GINA appears to be getting her long-awaited day in the sun. Amazingly, we haven’t all expired from old age.
- Second, the ridiculous case against bioartist Steve Kurtz has been dismissed. Sometimes the justice system actually works…on the other hand, I’m not sure it worked terribly well for geneticist (and former teacher of mine) Bob Ferrell:
Originally charged with mail and wire fraud, Dr. Ferrell entered a plea in October to a lesser misdemeanor charge of “mailing an injurious article” which carried a recommended guideline range of up to six months in prison and a $5,000 fine. In a statement, his family said he pleaded guilty for health reasons. Since the prosecution began, he suffered three strokes and dealt twice with cancer, which is now in remission.
In February, Judge Arcara sentenced Dr. Ferrell to serve 12 months unsupervised probation and to pay a $500 fine. In exchange for his plea, Dr. Ferrell was required to cooperate with the case against his friend.
These vagabond shoes…are longing to stray…
NEW YORK (GenomeWeb News) – The New York State Department of Health has sent warning letters to 23 firms involved in offering consumer genomics services and genetic tests to consumers, telling them that they need a permit to offer such tests and services, a department spokesperson told GenomeWeb Daily News today.
Jeez, you’d think these companies were trying to hold a parade or something.
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.
Skeptic tank
The scholarly paranoid, says Hofstadter, is also an apocalyptic thinker, “always manning the barricades of civilization.” At least one-third of Expelled is given over to the idea that evolutionary theory caused the Holocaust, via government-sponsored social Darwinism. (In pondering this terrible legacy, Ben Stein weeps at Dachau.) If the paranoid style in politics worried over the end of democracy, the paranoid style in science sees evolution as the end of values, antidepressants as the end of emotion, and genetically modified crops as the end of biodiversity.
But what about my alcohol dehydrogenase levels?
You know, people, if you give a guy a few Navitinis, he’s probably not gonna remember much at all…
Just sayin’.
High anxiety
“I think a broad-spread application of personalized genetic testing would create havoc and would likely lead to more harm than good…It will make people anxious, and it would probably push doctors to more aggressive interventions simply because of lack of information and a feeling they had to do something.”
- H. Gilbert Welch in the LA Times
Live long and prosper…but please shut up about it
Because [of] what your parents gave you to begin with — genetically or culturally or financially — and pure luck, you play a small role in determining how long you live. And even if you add a few years through your own initiative, by doing all the right things in terms of diet, exercise, sleep, vitamins, and so on, why is that to your moral credit? Extending your own life expectancy is the most selfish motive imaginable for doing anything. Do it, by all means. I do. But for heaven’s sake don’t take a bow and expect applause.
- Michael Kinsley on mortality
The Great Communicator
A Blog Around the Clock features an interview with my tremendously talented colleague, Kendall Morgan.
I recently took a course in mindfulness-based stress reduction through Duke Integrative Medicine. I think my biggest goal now is to find some balance in life and enjoy the moment.
Clearly she’s wise and well-adjusted, too.
We just hope you won’t forget the little people…
Let me add my loud huzzahs to the congratulatory chorus: Amy Harmon has won a richly deserved Pulitzer. I read everything she writes and if they are doing their homework, then my students do, too. Mazel tov, Amy!
I work as the Science Editor for 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."