HealthLawProf Blog

Editor: Katharine Van Tassel
Concordia University School of Law

Tuesday, September 18, 2007

Genes and Privacy and Relationships

The New York Times ran a front page cover story concerning a young woman's decision about whether to have a mastectomy based on her family's history of breast cancer and the results of a genetic test.  It was a rather revealing story and revealed quite dramatically the changes that genetic information holds not just for medical decision making but also for our relationships with family members.  The article discusses the young woman's options on learning about her increased risk for breast cancer and the advice she receives from her relatives about whether to pursue surgery:

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.

Even as she searched for her own answer in the year after her DNA test, Deborah Lindner, medical resident, found herself navigating her family’s strong and divergent opinions on the imperfect options that lay before her.

Her father, who once feared he would lose his wife to cancer, encouraged the surgery. Her sister reminded her that cancer might be cured in a few years if she could wait.  Her aunt said she hated to see her niece embrace a course of action akin to “leechings of the Dark Ages.” A cousin declined even to take the DNA test.

But it was her mother’s blessing that Deborah most eagerly sought.  Mrs. Lindner, who had passed her defective gene to her daughter, wanted to will her more time. When she had her own breasts removed she had been married for 27 years and had raised two daughters. Now Mrs. Lindner couldn’t shake the fear that her daughter might trade too much in her quest for a cancer-free future. What if taking such a radical step made it harder for Deborah to find someone special and become a mother herself?

The Next Hurrah has a great post on the article and states,

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. . . .

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.' "

According to the The New York Times, companies are anxious to inform the public about the availability of such tests and have started rather aggressive advertising campaigns.  The Times published an article last week discussing the concerns that some have over the manner in which companies advertise the availability of genetic tests.  The Times reports,

Breast cancer runs in my family,” one woman says. She is followed in quick succession by other young and middle-aged women, who say in turn: “My mother.” “My grandmother.” “My dad’s sisters.”

So opens a television commercial that is starting to run this week in New York and elsewhere in the Northeast. It urges women to consider being tested for certain genetic mutations that can sharply increase the risk of developing breast or ovarian cancer.   But the commercial, sponsored by Myriad Genetics, which sells the test, is stirring protests from some cancer and genetics specialists, and it has brought on an inquiry by Connecticut’s attorney general. Critics say that advertising such a complex screening test to the general population might create unnecessary anxiety among women and lead to overuse of the test, which costs $3,120.  “It really preys on the fears of our society, and one of those fears is getting breast cancer,” said Ellen T. Matloff, director of cancer genetic counseling at the Yale Cancer Center. . . . .

Myriad, which said it would cooperate with Mr. Blumenthal’s (Connecticut Attorney General)request, defends the commercial and other elements of what it calls a public awareness campaign. The company says that while its test has been given to about 200,000 women since 1996, only 3 percent of the women believed to harbor the harmful mutations that can be detected by the test have been identified so far. Therefore, the company says, there is a need for much more extensive testing.

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