Jewish Ethics and Biotech Innovation Clash in Supreme Court's BRCA Gene Case

Should Company Be Permitted to Patent 'Breast Cancer' Gene?

‘My DNA’: Lisa Schlager addresses protesters outside the Supreme Court. Many Jewish women may owe their lives to innovative new tests that uncovered their risk of breast cancer. But they strongly feel companies should not be allowed to patent genes.
courtesy of lisa schlager
‘My DNA’: Lisa Schlager addresses protesters outside the Supreme Court. Many Jewish women may owe their lives to innovative new tests that uncovered their risk of breast cancer. But they strongly feel companies should not be allowed to patent genes.

By Anne Cohen

Published April 18, 2013, issue of April 26, 2013.
  • Print
  • Share Share
  • Single Page

(page 4 of 4)

Myriad has also spurred acrimony with what some see as its failure to cooperate with the scientific community about BRCA. Myriad has sole access to a database of BRCA sequences that documents the minute variations that can make a change in the DNA of a BRCA gene dangerous. In 2004, Myriad stopped sharing that data with Breast Cancer Information Core, a breast cancer database run by the National Institutes of Health.

Chani Wiesman, a genetic counselor with Yeshiva University’s Program for Jewish Genetic Health and the Albert Einstein College of Medicine, said patent holders do not always choose to restrict who can use the patent. In the case of BRCA, Myriad limits how others perform the test for the gene and charges hefty royalties to those who do.

Wiesman says simple economics dictates that without the patents, the price of the tests would come down.

“If these genes were no longer under a patent, then more places would be able to do testing and it would be easier for patients to access this testing,” she said.

The issue of cost is no small matter. According to Sue Friedman, Executive Director of FORCE and a breast cancer survivor, the full panel of tests to detect the various and potentially dangerous mutations of the BRCA1 and BRCA2 genes can cost up to $3,400. The specific test that targets the mutations commonly found in Ashkenazi Jews is cheaper, running at roughly $500. Neither test is necessarily covered by insurance, leaving many women unaware of their status.

“As a hereditary breast cancer survivor, I am offended by that,” Friedman said.

Joanna Rudnick is a filmmaker whose 2008 documentary “In the Family” documented her efforts to grapple with difficult decisions after testing positive for the BRCA gene at age 27. She falls within the small group of Ashkenazi Jews whose BRCA1 mutation couldn’t have been detected as part of the traditional and cheaper test for common mutations. She was lucky enough to gain access to the full test that also looked for less common mutations. Otherwise she wouldn’t have been able to know she was at risk and to make the necessary decisions about her health.

She called Myriad’s patent on the BRCA gene a threat to scientific progress on a health threat looming over the entire Jewish community.

“There has been a chilling effect on many generations of Jewish families,” she said.

Outside the Supreme Court, Schlager was joined by her 12-year-old daughter, Rachel. The girl is working on breast cancer awareness as a mitzvah project for her upcoming bat mitzvah, emphasizing her own family history as well as the importance of the issue for the larger Jewish community.

Though Rachel is aware of her potential risk, testing for the BRCA gene isn’t recommended before a girl turns 18. And in any case, Schlager said she’s reluctant to get her daughter tested before she’s out of college.

“It’s a heavy piece of information for a young person,” she said. “She knows it runs in our family, and she knows that that’s why I’m involved, but she’s still developing, and I don’t want her to be fearful of her body. I want her to have some carefree years.”

Contact Anne Cohen at

The Jewish Daily Forward welcomes reader comments in order to promote thoughtful discussion on issues of importance to the Jewish community. In the interest of maintaining a civil forum, The Jewish Daily Forwardrequires that all commenters be appropriately respectful toward our writers, other commenters and the subjects of the articles. Vigorous debate and reasoned critique are welcome; name-calling and personal invective are not. While we generally do not seek to edit or actively moderate comments, our spam filter prevents most links and certain key words from being posted and The Jewish Daily Forward reserves the right to remove comments for any reason.

Find us on Facebook!
  • Are Michelangelo's paintings anti-Semitic? Meet the Jews of the Sistine Chapel:
  • What does the Israel-Hamas war look like through Haredi eyes?
  • Was Israel really shocked to find there are networks of tunnels under Gaza?
  • “Going to Berlin, I had a sense of something waiting there for me. I was searching for something and felt I could unlock it by walking the streets where my grandfather walked and where my father grew up.”
  • How can 3 contradictory theories of Yiddish co-exist? Share this with Yiddish lovers!
  • "We must answer truthfully: Has a drop of all this bloodshed really helped bring us to a better place?”
  • "There are two roads. We have repeatedly taken the one more traveled, and that has made all the difference." Dahlia Scheindlin looks at the roots of Israel's conflict with Gaza.
  • Shalom, Cooperstown! Cooperstown Jewish mayor Jeff Katz and Jeff Idelson, director of the National Baseball Hall of Fame, work together to oversee induction weekend.
  • A boost for morale, if not morals.
  • Mixed marriages in Israel are tough in times of peace. So, how do you maintain a family bubble in the midst of war?
  • Despite the escalating violence in Israel, more and more Jews are leaving their homes in Alaska to make aliyah:
  • The Workmen's Circle is hosting New York’s first Jewish street fair on Sunday. Bring on the nouveau deli!
  • Novelist Sayed Kashua finds it hard to write about the heartbreak of Gaza from the plush confines of Debra Winger's Manhattan pad. Tough to argue with that, whichever side of the conflict you are on.
  • "I’ve never bought illegal drugs, but I imagine a small-time drug deal to feel a bit like buying hummus underground in Brooklyn."
  • We try to show things that get less exposed to the public here. We don’t look to document things that are nice or that people would like. We don’t try to show this place as a beautiful place.”
  • from-cache

Would you like to receive updates about new stories?

We will not share your e-mail address or other personal information.

Already subscribed? Manage your subscription.