Who Owns Your DNA?

Twenty percent of all human genes have been patented by the companies that isolated them. That may not seem like a big deal, until you have to pay $3,340 for a breast-cancer test that could have cost $300. Bioethicist Lori Andrews is fighting back—all the way to the Supreme Court

By Nina Burleigh
Lori Andrews ethical issues DNA
Photograph: Dan Winters

I was 14 years old when my grandmother, a laughing, round-faced Swedish immigrant who liked nothing better than taking a brisk walk with her grandchildren, called to announce she’d been diagnosed with advanced ovarian cancer. Within a few weeks she was living in our house, her belly swelled up with the cancerous fluid called ascites, lying in bed in a state of unrelenting nausea, with my dad—her son—carrying her regularly to the bathroom so she could vomit. A few weeks later, she was in the hospital. And a few weeks after that, she was dead. Witnessing this as a healthy teenager was horrifying. Far from fading, the memory of my grandmother’s death has loomed over me ever since, because, it turns out, that exact cancer afflicted her mother, my great-grandmother.

Three decades later, in my forties, I started experiencing pain in my lower right abdomen. It was variously diagnosed as endometriosis or irritable bowel syndrome. At one routine physical, I mentioned the family history, and my GP suggested I get checked out by doctors conducting an ovarian-cancer study at New York University. There, a sonogram picked up an 11-centimeter mass. My doctor thought it was just a fibroid, but she strongly recommended that I get the test for the BRCA gene; if I had the dreaded female cancer mutation, it would make me 15 to 40 percent more likely to get ovarian cancer.

She wrote the prescription, and I called my insurance company for prior approval. It refused, on the grounds that the ovarian cancer is on my father’s side of the family, not my mother’s, and is therefore less likely to be passed down (though doctors consider maternal and paternal family histories of cancer equally). Of course, I could have had the test if I paid for it myself. But it cost $3,340, and I had two kids and an underemployed husband.

Fast-forward three years to today: The fibroid is still there. My doctor, who checks on the lump every six months, assures me that if it were cancer, it would be growing, which it isn’t. Although that’s reassuring, I’d enjoy more peace of mind if I knew my BRCA status. Which I don’t. The test still costs thousands of dollars. And I still cannot afford it.

But if bioethicist Lori Andrews succeeds at the U.S. Supreme Court, I may be able to have the test for a price closer to $300. Right now theBRCA test is very expensive because the gene has beenpatented by some of the researchers who helped to isolate it. Myriad Genetics, the patent holder and sole provider of the diagnostic test for the gene, has the right not only to set the price for the test but also to approve or prevent any non-Myriad research involving the gene. Should a commercial entity be entitled to patent a human gene, as if it were a product the company had invented? Andrews, who is also a lawyer, says no. “Patenting a genetic sequence is like patenting the alphabet and charging us a royalty each time we speak,” she once told CBS News, and since 2005 she has been working with other lawyers to overturn the patent. Now the case has a good chance of reaching the Supreme Court.

That is why, on a sunny summer day last year, I visit her in Chicago. Even though the skirt suit she’s wearing is a TV-ready purple, Andrews, 59, is so slight that she nearly disappears in her large, glass-walled corner office on the fifth floor of the Chicago-Kent College of Law. Petite and fair, she brings to mind Reese Witherspoon’s character in Legally Blonde. Decades ago, when she was a newly minted graduate of Yale Law School, the elders at her firm openly called her the lawyerette.

Thirty years on, that lawyerette has staked a place for herself on the futuristic edge of her field, where ethics tries mightily to keep pace with technology. “I have been an early-warning system about technologies and about what can go wrong in a society that is hugely enthusiastic about technologies,” she says as assistants hand her one document after another. “Throughout my career, I’ve looked at the impact of technology on individuals and on society as a whole. And women have been central from the beginning.”

First Published January 17, 2012

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JoAnn 01.22.2012

Good article. Another fascinating read on medical unethicalness is "The Immortal Life of Henrietta Lacks written by Rebecca Skloot"which goes into how the medical industry put patents back in the 1950s on Ms. Lacks very unique tissue samples unbeknownst to her family...Much more public education is needed on this topic.

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