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

Andrews took the Canavan case, as it is popularly called, pro bono on behalf of the Greenbergs. Working on a shoestring budget, she attacked the patent on the grounds that for the first years of research, the Greenbergs and other parents had not given their informed consent. Matalon had taken blood and tissue samples from the Greenbergs without asking them to sign anything; when consent forms were finally written and signed, she alleged, they didn’t include any information about patents or about the hospital’s intent to commercialize the findings. The case was settled, and per the terms of the agreement, Miami Children’s Hospital maintained its patent and the right to charge a royalty for clinical testing but agreed to allow license-free use of the gene for research. “It nearly killed me,” Andrews says of the case, describing how she had to fly to Miami repeatedly, on her own dime, and file documents herself, as opposed to hiring a paralegal to do so.

Chicago-Kent associate law professor Ed Kraus worked with Andrews on the Canavan case and recalls the scene as she argued that gene patenting was wrong. “We were meeting with these confident, big-firm intellectual property lawyers,” Kraus says. “And Lori explained this brilliant, unexpected legal theory. Seeing this petite, blonde-haired law professor, they dismissed her theory as naive and idealistic. Now, it’s a few years later, and Lori’s ‘naive’ theory will soon be considered by the Supreme Court.” Kraus is an unabashed fan. “Her brain never stops working,” he says. “It’s not just the sort of raw intelligence she has. The speed at which she processes information is freaky. She has unbridled energy for pursuing important legal issues.”

That energy has led her far beyond legal circles. Andrews likes to involve artists and writers in analyzing the big, vexing philosophical questions she deals with, such as, Who owns our bodies? And what does decoding the genome—the building blocks of life—really mean for humanity? “Philosophers and economists have just started thinking about what society will look like in the post-genome era, but writers and artists have been thinking about it for a long time,” she says. At one conference she organized, she met and became close friends with the author Michael Crichton, in whom she found a kindred spirit. She taught Crichton her bioethics course over the phone—she in Chicago, he in California—inspiring him to write a scathing New York Times Op-Ed about gene patenting. Noonan credits the Op-Ed she inspired with kicking off the anti-gene-patent movement. Crichton also wrote a book on the topic, Next, before he died in November 2008.

Three years after Crichton’s death, Andrews still cannot speak of him without choking up. She wants me to see his last speech about gene patenting and clicks on a video embedded in her laptop. As we watch, she wipes tears off her cheeks. “He was a very private, private person,” she says after regaining her composure. “He would show up at my conferences and just sit in the back and leave after and never say who he was. He never wanted attention. He came to the Supreme Court with me. I mean, he is like six foot eight or six foot nine; I’m five one. You can just imagine us walking up the steps there.”

As the Myriad case heads for the Supreme Court, Andrews is moving on to something new: the potential perils of social media. She became interested a few years ago when an acquaintance’s daughter friended her on Facebook. The young woman was in her early twenties and applying to college. Looking at her Facebook page, Andrews noticed frequent references to a violent Facebook game called Mafia Wars, in which players pretend to be gangsters building their own criminal empires. Andrews, whose professional path was paved with ambition, deliberation and personal restraint, was appalled. She called the young woman and advised her to start deleting. “She didn’t believe me when I told her that colleges and employers were turning down applicants because of Facebook posts,” Andrews says. “So I started collecting cases and surveys to send her.”

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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