Angelina Jolie and the fate of breast cancer genes

Angelina Jolie’s Op-Ed in the New York Times about getting a double mastectomy after learning that she was at risk of getting breast cancer struck a chord with fellow celebs as well as with Los Angeles Times staffers Anna Gorman and Paul Whitefield, who wrote about their own experiences Tuesday.

Jolie’s Op-Ed specifically focuses on BRCA1 and BRCA2, known as the breast cancer genes. “I have always told [my kids] not to worry [about me getting cancer], but the truth is I carry a ‘faulty’ gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer,” she writes.

So Jolie did what she could to take control of the matter and elected to have all of her breast tissue removed, thereby reducing her chance of developing breast cancer from close to 90% to under 5%. She then wrote about the experience to raise awareness and empower other women.

How much control we, as a society, have over BRCA1 and BRCA2, and human genes in general, however, is yet to be determined.

The BRCA1 and BRCA2 genes are currently at the center of a controversial case before the U.S. Supreme Court that asks whether it should be legal to patent human genes.

In an Op-Ed about the case, Marcy Darnovsky, executive director of the Center for Genetics and Society, and Karuna Jaggar, executive director of Breast Cancer Action, argued in our Opinion pages:

The patents give one biotechnology company, Myriad Genetics Inc., sweeping control of the two genes. Myriad’s monopoly harms women’s health, impedes cancer research and raises important ethical questions about control over the human genome. […]

Genes are not inventions but products of nature. You can’t patent the sun; you can’t patent a new species of insect you find in a forest; you can’t patent the speed of light. And you cannot patent human genes.

Beyond U.S. patent law lie broader questions: Should we treat human genes as private property to be exploited for profit rather than shared resources managed in the public interest? Should we allow corporate ownership to penetrate deeply into areas previously considered outside the commercial realm? […]

A ruling in favor of the plaintiffs in this landmark case could effectively outlaw human gene patents. It would be a victory for all who put the public’s health and interests above efforts to privatize what all of us should share. And it would restore our genomic heritage, the very DNA in our bodies, to the rightful owners — the people.

In a rebuttal, Peter D. Meldrum, president and chief executive of Salt Lake City-based Myriad Genetics Inc., wrote:

The issue before the Supreme Court is not about Myriad. This is about the consequences to the life sciences -- and for innovation. If isolated genetic materials cannot be patented, we’ll see a loss of cutting-edge services with enormous benefit to society.

In a blog post Tuesday, Times editorial board member Jon Healey brought up another issue of significant consequence:

The monopoly provided by Myriad’s patents allows the company to control the price of the test and determine what sort of research will be conducted. Opponents complain the price is so high that some lower-income women can’t afford it. They also object to the idea of any company acting as a gatekeeper to medical research. The trove of data Myriad collects in its tests could be extremely valuable to researchers, but according to [ACLU staff attorney Sandra] Park, the company has stopped contributing its results to an international database on the BRCA genes.

The Times’ editorial board has also weighed in on the case. An excerpt from an editorial in January makes this case:

The public clearly benefits from the investments that private companies make in genetic research. But it doesn’t necessarily follow that barring patents for gene sequences would lead to fewer breakthroughs on genes and their correlations with disease. There is a virtually insatiable demand for better diagnostic tools and more efficient and effective treatments. The amount we know about health and disease pales in comparison to what we don’t know. This demand for advancement provides a powerful incentive for companies to seek their fortunes in discoveries. Even if a gene can’t be patented, its discovery can lead to diagnostic and treatment techniques that can be.

That’s a policy choice, though, not a legal issue. It amounts to a judgment call about whether it’s right to give a company control over access to essential pieces of information about the body’s natural programming, and whether it makes sense to trust that company to share the information freely with researchers and license it widely to competitors. On both of those questions, we think the answer is no.

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