The New York Times ran a good "personal history" piece on a woman who knows she inherited from her mother a copy of the tumor suppressor gene BRCA1 that predisposes her to breast and ovarian cancers at a young age (probably by the time she turns 40). It describes her struggle with the decision merely to monitor herself carefully or to commit to the best cure available against breast cancer: double mastectomy. It's an informed choice her generation will be the first to face.
Joan Lindner, 63, is a cancer survivor. Her daughter, by contrast, is one of a growing number of young women who call themselves previvors because they have learned early that they are genetically prone to breast cancer, and have the chance to act before it strikes. [...]
Parents who have fought cancer typically have no experience with the choices that confront their children, and guilt over being the biological source of the problem can color their advice. Siblings and cousins who carry the risk gene evangelize their own approach to managing it, while those who dodged its inheritance seem unqualified to judge.
The story is a sign of our changing relationship with our genetic inheritance -- not only the substance of the story, but the very fact that an entire family's genetic pedigree and relevant medical data, with their photos, was published as a front-page story in a major newspaper. Maybe it's the exhibitionism of the reality TV age dovetailing with the post-genome era: only one member of the pedigree declined to have his name and photo published. (Why didn't the NYT respect his wish for privacy and just leave him off the tree?) Not only do we know more than ever about our genetic makeup, we are sharing it.
Importantly, our ability to read (and publish) our genes is outpacing our philosophy of when to do so. Ultimately, the answer is simple: it's up to the individual. But those individuals will want to make an informed choice, and (as I've written many times) in a setting where about 3/4 of us believe in angels but only 1/4 believe in evolution, the infrastructure is not in place for people to be savvy consumers of genetic information. Add into the mix the self-interest of counseling companies, pharmaceutical companies, and insurance companies and you get a recipe for confusion and frustration.
How will we overcome it? There may emerge trustworthy companies to help you interpret whether new medical studies apply to you: for example, 23andMe was started recently by the wife of one of Google's founders (and with a substantial investment from Google itself) for just these ends. (Hm, and they're hiring...) But, I'm afraid people will always crave certainty and a quick fix, and that's not what most legitimate research will offer -- so, unfortunately, it's not time to sell short snake oil futures just yet.
And who gets to read your DNA? Your employer? Your insurance company? The government? New York Gov. Eliot Spitzer has been trying to expand DNA databasing to anyone convicted of a misdemeanor, and some states apparently collect DNA from anyone arrested (whether or not they are convicted). Will your DNA become a bit of personal information like your social security number -- putatively private, but in reality requested every time you fill out a form, apply for credit, visit your dentist?
Below these pragmatic concerns there exists a deeper question about humanity and free will. How "proactively" do we want to try to control our future, and to what degree should we realize that we may be able to lightly weight the dice, but in the end we can only really control our own attitudes toward what may come? Arlo Guthrie decided not to be tested for the copy of the gene that led to his father, Woody, dying of Huntington's disease, for which there is still no treatment. He recently passed the age at which his father died, and is still going strong without any sign of illness -- he said, "I spent the day talking to my dad about it, as it were [...] I said, 'All right, there's progress. And if my kids live a day older than I get to be, we're moving in the right direction, anyway.' "