iOS app Android app More

Featuring fresh takes and real-time analysis from HuffPost's signature lineup of contributors
Rep. Debbie Wasserman Schultz

GET UPDATES FROM Rep. Debbie Wasserman Schultz
 

The Supreme Court's Gene Patenting Decision Was Personal

Posted: 06/20/2013 4:59 pm

The United States Supreme Court recently ruled that human genes cannot be patented, and this is exciting news for cancer patients, and individuals seeking to learn more about their genetic risk for disease.

The unanimous decision in Association of Molecular Pathology v. Myriad Genetics struck down patents held by Myriad Genetics Inc. on two genes, BRCA1 and BRCA2, mutations of which are linked to dramatically increased risk of breast and ovarian cancer.

For me, this decision is personal. When I was diagnosed with breast cancer, I was advised to be tested for the BRCA1 and BRCA2 gene mutations. I ended up testing positive for the BRCA2 gene mutation, but because one company had a patent on the BRCA1 and BRCA2 genes, I was unable to get a second opinion on the test. Like thousands of women before me, and thousands since, I had the devastating experience of making life-altering decisions based on the results of one test. I believe that the Supreme Court's decision is a victory for everyone who believes that a company cannot patent parts of our body. This decision ends this practice, giving patients new options to learn of and verify their genetic risks.

As a long-time women's health and cancer awareness advocate, I had introduced and supported legislation both in the Florida Legislature and in Congress that helped women with breast cancer -- including my bill to end "drive-thru mastectomies" by requiring Florida health insurers to allow women to remain in the hospital following surgery for more than one day, in consultation with their doctors.

But when I found my lump during a routine self-exam, I realized how much I didn't yet know about breast cancer. As a young Jewish woman of Eastern European descent, I was at a dramatically higher risk of carrying a genetic mutation that could put me at an 85 percent lifetime risk of getting breast cancer and made me up to 40 times more likely to get ovarian cancer.

This was one of the reasons, as well as a diagnosis at the relatively young age of 41, that I was advised to be tested for the BRCA gene mutations because people with those mutations are more likely to have recurrences of breast cancer. My cancer was early stage, but testing positive also put me at a high risk of ovarian cancer. For me, the decision I had to make was -- do I have the lump removed and do limited radiation to kill off any remaining cancer cells? Or do I undergo seven surgeries to remove my breasts and ovaries, based on one test from one company, to reduce my risk of recurrence? Previously, only Myriad Genetics, or companies with a license from Myriad Genetics, could do research and administer a test to see if gene mutations were present. Now, other companies can also perform the test, and some have already announced they will offer the test at prices significantly lower than Myriad.

As a result of this experience, I introduced legislation requiring the U.S. Patent and Trademark Office (USPTO) to conduct a study on ways to remove barriers for patients to get access to second opinions on genetic testing when a gene is patented. The legislation passed and the USPTO has recently completed their work on the study, which should be released this summer. I plan to introduce some follow-up legislation based on the Supreme Court ruling and the recommendations from the USPTO study, and I look forward to working with my colleagues to further increase access to health care and genetic information for patients across the country.

Now, as gene patents begin to fall away, we must overcome the next big hurdle -- sharing the momentous data these tests provide. Myriad has run over a million BRCA tests since their creation of the test in 1996, and they have a treasure trove of information on the various mutations and the BRCA population that could have profound implications on medical research and treatment for the entire cancer community. As Myriad continues to offer this important test, now with increased coverage from the Affordable Care Act, we should work together to allow researchers access to this valuable data.

In the meantime, it is vital that public and private health insurers maintain and increase coverage for genetic tests for those patients at risk of a mutation -- men and women with a family history of cancer, women in certain ethnic groups, and those with advanced diagnoses at a young age. I am proud to continue working with a coalition of dedicated cancer and genetic advocacy groups to move these priorities forward.

As our nation's brilliant scientists unlock the human genome, we must do all we can to unlock barriers to health care as well. We owe that much to those whose lives hang in the balance, and for the future generations to come.

 
FOLLOW POLITICS