Angelina Jolie's Genetic Self-Ownership Is the Future of Medicine


The actress Angelina Jolie writes in The New York Times:

My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.

Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.

Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.

Welcome to the future of medicine, in which well-informed patients make decisions that even a few decades ago would have been either impossible to make (due to lack of testing or knowledge) or balked at by the medical establishment (due to reactionary ideas about human nature or bodily integrity). 

Jolie is atypical, of course, and not simply because she's a movie star and multimillionaire. She has access to forms of genetic testing that are still not widespread and relatively expensive (one report I read said her genetic markup cost about $3,000). But as Reason's Ronald Bailey has written, the sorts of information Jolie accessed are becoming cheaper to generate and will become totally commonplace absent repressive medical regulations that are unfortunately favored by the typical bioethicist. 

Somewhat related: In a blog post yesterday, Brian Doherty noted a critique of the latest installment of political scientist Corey Robin's ongoing attempt to cast libertarian economists such as F.A. Hayek and Joseph Schumpeter as defenders of a hierarchical, aristocratic social order that exists only to serve the rich. In thinking about Jolie and her privileged access to certain forms of medical technology, I'm reminded of Schumpeter's observation that "Queen Elizabeth owned silk stockings. The capitalist achievement does not typically consist in providing more silk stockings for queens but in bringing them within reach of factory girls."

So it is with genetic testing. The site already offers a basic genetic test "for health, disease & ancestry" that costs just $99 for a rudimentary mark-up. Assuming that the innovation in such areas isn't totally stymied in the name of faux egalitarianism (either we all get something at the same time or no one does) or in the name of protecting those of us who are too dumb to live with knowledge of our own genetic codes, expect more and more for less and less.