SAN ANTONIO -- A new dimension seemed evident at this year’s San Antonio Breast Cancer Symposium with the proliferation of information about new commercial blood tests for BRCA genetic mutations.
This marketing effort was prompted by the U.S. Supreme Court’s ruling earlier this year that restricted the patenting of human genes, and in effect ended Myriad Genetics monopoly of the BRCA genetic mutation testing market.
Public attention was again focused on the issue last month when the Food and Drug Administration banned sales of genetic home-testing kits sold by 23andME, a personal genomics and biotechnology company.
In conjunction with SABCS, Myriad and a number of its competitors sent reporters covering the meeting various news releases related to its products, so my attention was piqued when I noticed an announcement at the meeting itself for “Cancer and BRCA in the News, Arts, and Popular Culture”—described as a “panel discussion about how the characterization of breast cancer and BRCA gene mutations by news media and in pop culture influences awareness, attitudes, and behaviors of patients and providers.”
The event -- moderated by Elizabeth Cohen, Senior Medical Correspondent of CNN’s Health, Medical and Wellness Unit and featuring four panelists involved in patient advocacy or production of media projects dealing with BRCA -- was sponsored by the Alamo Breast Cancer Foundation and Quest Diagnostics. That company had introduced its version of a lab-developed genetics test that identifies BRCA1 and BRCA2 gene mutations, BRCAvantage, in October during Breast Cancer Awareness Month.
A Quest representative said that the theme of the event was inspired by a national Harris Interactive Poll the company commissioned to survey some 1,400 adult women in the United States about their “perceptions and understanding of BRCA testing for risk of inherited breast and ovarian cancers.”
The survey found that:
- 72 percent had never heard of BRCA;
- 58 percent would want to know if they carried high-risk gene mutations;
- 29 percent said they knew what a genetic counselor was.
Quest stated in a news release that with the wide depiction of inherited cancer and BRCA testing in the news, arts, and popular culture, the company hoped that the panel discussion “will reveal actionable insight into the contradiction between high visibility and low awareness and understanding of the role of genetics in hereditary cancers.”
Quest’s General Manager for Oncology, Gerald LaFlamme, welcomed the audience of approximately 300 people -- a large number of whom were breast cancer survivors and advocates -- and then Cohen introduced each of the panelists:
Steve Bernstein, a Hollywood cinematographer, spoke about his seven-year experience creating and directing “Decoding Annie Parker,” a film he co-wrote with his son Adam, and starring Helen Hunt as Mary-Claire King with a cast including Samantha Morton, Rashida Jones, Aaron Paul, Richard Schiff, and Bradley Whitford, among others.
The film deals with King’s discovery of the BRCA1 gene and its link to breast cancer, intertwined with the real-life story of Annie Parker, who carried the mutation. The film is scheduled for commercial release next summer and to date has helped raise some $1 million for breast cancer organizations in the U.S. and abroad as a result of fundraising screenings.
Also on the SABCS panel, Caitlin Brodnick, a comedian, writer, and storyteller, discussed her decision to have a preventive double mastectomy at age 28 after finding out she was BRCA1-positive a few years earlier.
Documentary filmmaker Joanna Rudnick directed the PBS Emmy-nominated “In the Family,” which dealt with coming to terms with her BRCA mutation and was screened on Capitol Hill during the effort to pass the Genetic Information Nondiscrimination Act of 2008 (which prohibited discrimination on the basis of genetic information with respect to health insurance and employment).
Finally, Sue Friedman, DVM, Executive Director of FORCE (Facing Our Risk of Cancer Empowered) -- who started the group in 1999 after testing positive for BRCA2 in 1996 and is a 17-year breast cancer survivor -- addressed how awareness in the media has been instrumental in changing perceptions.
She mentioned, for example, actress Christina Applegate’s decision to have a double mastectomy after being diagnosed with breast cancer in 2008 and then learning she was BRCA1 positive, as well as Angelina Jolie’s highly publicized prophylactic double mastectomy earlier this year based on her BRCA1 mutation.
Friedman said she had received some ridicule by a medical journalist who thought the term “previvor”--which she had coined for “survivors of a predisposition to cancer” -- was “medicalizing risk.”
“The term gave a voice and label to a community that wanted to be stakeholders too,” she said, acknowledging that the media can also be “polarizing, evocative, and indispensible.”
Following the presentation and a brief question-and-answer period I turned to one of the breast cancer survivor-advocates at my table, and asked what she thought was the main message of the presentation. I posed the same question to several other advocates in the audience including some members of ABCF, the event’s co-sponsor.
To a woman, each one confirmed that although the individual anecdotes presented were very interesting, the panel overall did not provide a cohesive discussion guided by the moderator that led to any particular point or conclusion.
I also learned that CNN’s Cohen had not registered as media to cover the conference beyond her invitation by Quest.
I found it troubling that there was no balance on the panel, and that all five presenters were Jewish -- perhaps subliminally reinforcing the view that BRCA mutations primarily affected those of Ashkenazi heritage -- and that the many references to Angelina Jolie during the discussion may have referred to her family history but did not address the fact that her French-Canadian ancestry also placed her in a higher-risk group.
When I asked the Alamo representatives what their role had been as a co-sponsor they said they had been contacted only about two weeks earlier by Quest and been asked to secure the venue.
Alamo said that beyond arranging for the room and sending invitations, the organization had had no input into the content or selection of panelists.
Later during the symposium I asked Erica L. Mayer, MD, MPH, with Dana-Farber Cancer Institute’s Breast Oncology Program (who did not attend the Quest-Alamo event), her view of the emerging BRCA mutation commercial blood testing market.
“It’s more important than ever for a woman to know her BRCA1 and 2 gene mutation status and how that might affect her current and future management of prevention,” she said, warning that BRCA blood testing was somewhat complicated because of the personal and medical implications.
“Testing should take place in a controlled environment with a certified cancer genetics counselor to address issues related to how it works, genetic discrimination policies, payment, and privacy.” In addition, she emphasized, this is a specialized test and patients should request a genetics counselor with specialized training.