When I heard that the ACLU had made a formal challenge to the patents on BRCA1 and BRCA2, held by Myriad Genetics, I was in between my bi-annual MRI screening for breast cancer and packing to attend the Facing Our Risk of Cancer Empowered (FORCE) conference in Orlando, celebrating 10 years of advocacy around issues affecting the BRCA community.
How fitting to find out that the commercial ownership of the two genes that impact this population so disproportionately -- in terms of our extremely high chances of developing breast and ovarian cancer -- was being called into question on the eve of the conference.
I shared my story of testing positive for the BRCA1 mutation in the documentary In the Family, which was nationally broadcast on PBS's P.O.V. series in October 2008. The focus of the film was the life-saving, yet excruciating, consequences of learning that one has this mutation.
During the filming process, I was lucky enough to get a second opinion -- I was re-tested in Canada, outside of Myriad's lab. The result was still unfortunate. I had the mutation, but I also had something most women and men who test for this mutation don't have -- the security of a second opinion. If women are removing breast and ovaries based on this information, is a second opinion too much to ask for?
And for women like Martha Haley, who want to know if BRCA is the culprit in their breast cancer, should the over $3000 cost of the BRCAnalysis® test be a barrier to that information?
During the film, Martha is able to get tested through an Avon-funded program for underinsured women at John H. Stroger Jr. Hospital of Cook County (the hospital made famous by ER). Dr. Pam Ganschow, who gives Martha her test results, applied for the Avon program when she was running into barriers with Myriad's special assistance program. She tested four women through Myriad's program vs. over 100 through the Avon grant in the same amount of time.
Martha's story and my growing fear that the patents were limiting our ability to discover new breakthroughs in the prevention and treatment of BRCA-related cancers -- let alone the development of a better diagnostic test -- led me to Myriad's headquarters in Salt Lake City, Utah.
After an extensive tour of the lab, I sat down to interview the Founder and Chief Scientific Officer of Myriad, Dr. Mark Skolnick. The lab was beautiful and state of the art, but Skolnick's answers surrounding the ethics and detrimental consequences of gene patenting were unsatisfying, leaving more questions than answers and leading to where we are now with the ACLU challenge.
Here is an excerpt from In the Family, showing my interview with Dr. Skolnick:
How will Donald Trump’s first 100 days impact YOU? Subscribe, choose the community that you most identify with or want to learn more about and we’ll send you the news that matters most once a week throughout Trump’s first 100 days in office. Learn more