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

In 2005, Andrews enlisted the American Civil Liberties Union to represent women and doctors against Myriad’s breast- and ovarian-cancer gene patent, and in 2009 the ACLU and the Public Patent Foundation—representing 150,000 researchers—filed a lawsuit on the grounds that Myriad’s patents are unconstitutional. Andrews herself became the lawyer for the American Medical Association and filed an amicus curiae (friend of the court) brief. In 2010 a federal judge trying the case accepted the argument that genes were unpatentable products of nature, a huge victory for Andrews and her side. But Myriad appealed. Court observers were stunned when the U.S. Justice Department, which had previously supported gene patenting, filed a brief supporting Andrews’s view.

Then, in July 2011, a three-judge appellate court overturned the trial court’s decision two votes to one. The ACLU appealed to the Supreme Court, and lawyers on both sides expect the high court to take the case. “From the beginning, we’ve known this was destined for the Supreme Court,” Andrews told me after Myriad’s successful appeal. “There’s far too much at stake to leave it in the hands of the lower courts. For the past 150 years, the Supreme Court has said that no one can patent a product of nature, so I feel confident that the justices will right this wrong.”

Andrews’s passion on the subject has convinced many people, but according to some, it is also her professional weakness. “Andrews has been honing her argument for about 10 years,” says Kevin Noonan, a Chicago-based patent lawyer who filed an amicus brief in favor of patenting. “She’s certainly a galvanizing force against gene patenting. The problem for patent lawyers is that a lot of the argument is so emotional. Phrases like ‘human life commodified.’ Well, I say, fine! Let’s run the world your way. Then either nobody invests or nobody shares information.”

Andrews’s personal outrage and “emotional” talk, as Noonan puts it, has attracted powerful enemies. Andrews says she gets hate mail “all the time” from patent attorneys: “I’ve written on embryo research, and even the right-to-life people who send me hate mail don’t write as devastating mail as the lawyers.” Chicago-Kent Law dean Harold J. Krent says prospective students have been known to apply specifically to work with Andrews. Yet even he has felt the heat in the wake of controversy she’s stirred up. “I have somebody on my board of overseers who wasn’t always thrilled with the positions she took, particularly in the genetic-patent area,” Krent says. “He understood that there’s academic freedom, but he had been general counsel to a big pharmaceutical company. I think it’s important in an institution to have people who speak their mind, even if it is adverse to the financial interest of members of the board or members of the community.”

The Myriad suit may be Andrews’s most high-profile case, but it is not her first foray into the legal issues raised by gene patenting. That distinction belongs to a case very close to home, in suburban Chicago. A local family, the Greenbergs, had two babies with Canavan disease, an inherited brain disorder that is always fatal, usually in childhood. Early on, the Greenbergs got involved with trying to help doctors and researchers develop a prenatal test and find a cure. They recruited dozens of other families of children with Canavan to provide samples of blood and urine, and after their own older child died, they even turned over tissue from the autopsy. In 1993 one researcher the Greenbergs had been working with, Reuben Matalon, MD, identified the Canavan gene.

Once the gene was isolated, hospitals around the world started prenatal screening; in 1996 the Canavan Foundation offered free testing at Mount Sinai Hospital in New York City. But in 1997, Miami Children’s Hospital, where Matalon then worked, obtained a patent on the gene and would not allow any further testing without a license from the hospital and a royalty payment of $12.50 per test. The hospital also limited the availability of testing.

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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