Read as much as you want on BostonGlobe.com, anywhere and anytime, for just 99¢.

Celtics Live

94

88

Final

opinion | amy boesky

For patients, joy and relief in gene ruling

Like many people affected by the BRCA mutation, I have been waiting for the Supreme Court to rule on patents held by Myriad Genetics on the so-called “breast cancer genes.” Now, the wait is over: On Thursday, the court ruled unanimously against Myriad’s patents on BRCA1 and BRCA2, saying that genes — even those isolated in a laboratory — are “products of nature,” not inventions.

It is hard to explain the emotions I feel about this decision. Mostly, I feel joy and relief. This decision will widen access to BRCA testing. Plaintiffs and litigators have turned the spotlight on economic injustices that have left many people without recourse to testing for the BRCA mutation, partly due to the profit margins that led Myriad, a biotechnology company based in Utah, to keep the costs of BRCA analysis unfairly high. Almost as soon as the court announced its decision, companies began to come forward with more affordable options for testing, reminding us how important competition is to keep costs down.

Continue reading below

Moreover, the decision will allow people to obtain second opinions; until now, none of us has been able to confirm results obtained by Myriad from other labs. Given the difficult decisions we face about prophylactic surgeries or other clinical interventions, confirmation and second opinions are critical.

Further, the decision will free researchers to pursue unanswered questions that impact many of us affected by hereditary cancers. What other mutations on the BRCA genes have not yet been discovered? Why do some individuals get negative or unclear results, despite overwhelming evidence of hereditary breast and ovarian cancers in their families? How might better research help to improve clinical outcomes for those in our community with disease unresponsive to available treatment options?

For all these reasons, the Supreme Court ruling matters. The decision is not, of course, an end point, but an important milestone in a journey with many challenges ahead. It is also a milestone that underscores the importance of advocacy and of community.

Like many people, my experience with the BRCA mutation was initially both deeply personal and deeply private. I grew up in a family shadowed by hereditary cancers. My mother’s mother died of ovarian cancer at 43; her sister at 45; my mother’s only cousin at 49. My mother had a preventive hysterectomy to avoid what seemed to be her fate. She did avoid ovarian cancer, but three years after undergoing surgery, she was diagnosed with breast cancer; six years later, she died of metastatic disease.

My sisters and I didn’t learn until almost a year later that the two cancers were connected in our family, or that HBOC — hereditary breast and ovarian cancers — were associated with the BRCA gene. There was so much we didn’t know then, and only years after having preventive surgery did we learn that Myriad had been granted patents on BRCA1 and BRCA2, which allowed it to control both the pricing and boundaries of BRCA testing in the United States. This knowledge compounded my sense of helplessness and vulnerability. So, too, did the sense of isolation attached to the mutation.

Like many people, my experience with the BRCA mutation was initially both deeply personal and deeply private.

Quote Icon

Now, hearing the news from the Supreme Court, I feel deeply grateful to the lawyers, doctors, researchers, and plaintiffs who worked tirelessly to bring this case forward. This important decision owes much to their work, and to the willingness of key plaintiffs to make their stories public.

It is all too easy to presume that large-scale institutions operate under the aegis of what Michel Foucault has called “bio-power,” to believe that individuals don’t matter. Maybe it takes a decision like this one to remember why it matters so much, in the end, to be just a “product of nature” after all — imperfect, vulnerable, subject to all the vicissitudes and issues that are part and parcel of the natural world. Not everything, in the end, is man-made.

At the same time, sometimes it takes human beings to uphold the right to be part of something bigger than we are, something we can’t own — and that can’t be controlled by patents.

Amy Boesky is editor of “The Story Within: Personal Essays on Genetics and Identity,” which will be released in October, and author of “What We Have: A Memoir,’’ an account of her family’s experience with BRCA1.
Loading comments...

You have reached the limit of 5 free articles in a month

Stay informed with unlimited access to Boston’s trusted news source.

  • High-quality journalism from the region’s largest newsroom
  • Convenient access across all of your devices
  • Today’s Headlines daily newsletter
  • Subscriber-only access to exclusive offers, events, contests, eBooks, and more
  • Less than 25¢ a week