07/09/2010 08:33 am ET Updated Nov 17, 2011

I Want My Body Back: Why Corporations Shouldn't Hold Gene Patents

It turns out my body isn't completely mine. One of my genes--the one that's had the biggest impact on my life--is owned and controlled by a biotech firm in Utah. That company, Myriad, actually holds a series of patents on me--or at least this part of me. And I'm not happy about it.

Discovering your family carries a genetic mutation isn't simple or easy, but I've had to accept it. Discovering that gene is controlled by a for-profit company, however, is cause for outrage. Since my family learned we carry BRCA1, the "breast cancer gene," I've agonized over whether or not to be tested. (BRCA1 and 2 significantly increase the risk of early onset breast and ovarian cancer in women and prostate cancer in men.) How would it feel to live with the results? Would I advise my daughters to be tested? If so, at what age? Though I finally decided genetic testing isn't for me now, I've greatly valued my power to decide for myself--until, over the past few months, I've discovered how much that choice has been impacted by the company in Utah that's held patents on these genes since 1994.

On March 30, in a decision described as "jaw dropping," Judge Robert Sweet ruled in favor of the ACLU against Myriad Genetics, declaring patents on the BRCA genes invalid. Last week, Myriad appealed Sweet's decision, insisting that by isolating these genes, it has "transformed" them from works of nature into products. Debate on the subject is beginning to heat up.

This case, which may go to the Supreme Court, could well become a "game changer," to quote Professor Wendy Chung, a geneticist at Columbia University and one of the plaintiffs in the ACLU's case. But to change the game, we need to understand how it's currently being played.

As a member of a BRCA1 family, I strongly oppose Myriad's patents and applaud those plaintiffs fighting to "liberate their genes." The implications of ACLU v. Myriad Genetics extend far beyond the breast/ovarian cancer communities. At stake is the way we understand our bodies and their relation to corporate control. Knowledge may be power, but who owns that knowledge? When does discovery become invention, and what happens to our sense of being human when the two are elided?

Some argue gene patents provide critical financial incentives, promoting "excellence" in biotech research. But profit is possible without patents. Myriad's control of the BRCA genes exposes the pragmatic and ethical dilemmas such patents involve: who tracks and interprets data? Who sets the costs of genetic tests and determines the scope of research trials? These questions require thoughtful dialogue and debate; this is no place for a monopoly, intellectual or economic.

Granting Myriad exclusive rights to the BRCA genes creates serious problems for patients, who may not have $3,000 for the test, may choose life-changing surgeries based on inconclusive results, may need (and be denied) second opinions. Currently, no labs outside Myriad's domain can administer BRCA tests. Scientists outside Myriad's purview have been ordered to "cease and desist" research on BRCA genes. And since Myriad began urging doctors to administer BRCA tests without the "bottleneck" of genetic counseling, patients lose out on expert advice. Who benefits from granting Myriad so much control? More important, who loses?

Myriad's argues that isolating BRCA genes transforms them from "works of nature" into "products." Are we willing to allow our genes to be treated as products? In recent years, the US government has granted patents on thousands of human genes. Many involve complex conditions or diseases, of which BRCA genes are just one example. We may not realize the consequences of this until we face critical decisions about our bodies and find they're no longer ours to make.

If there is transformation to celebrate in the ACLU's suit against Myriad, it is that individuals from all walks of life are beginning to unite in this cause. There is nothing fair or simple about carrying a hereditary disposition for a life-threatening disease. Our culture owes it to families with genetic mutations to make testing as effective, accessible, and thoughtfully administered as possible, not to shut people off from second opinions, leaving them dependent on a single company.

"Myriad," it is worth remembering, means "multiple." Ironically, that is what the BRCA population needs: myriad companies, myriad approaches, myriad studies and protocols--not, in the face of complex choices, a single monopoly controlling what we have, and how we learn we have it.