You can also read Joanna's blog on the Huffington Post.
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.
During the filming process of IN THE FAMILY, 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:
Heading to the annual Joining FORCEs Conference in Florida this weekend? On Friday, May 15, filmmaker Joanna Rudnick will speak during the opening remarks and then again at 11:00 AM for a discussion about the issues previvors face during the Young and High-Risk session. In the Family screens at 3:10 PM. See you there!
In the Family has been chosen as one of the ten finalists for the National Institute for Health Care Management Foundation’s Second Annual Health Care Television and Radio Journalism Award. The finalists will be recognized at the combined Journalism and Research Awards Dinner on June 15, 2009 in Washington, D.C., where the winner will be presented with an award and $10,000 prize.
In the Family screens twice this week in the Netherlands!
April 14: IKON broadcasts the film on TV at 11:30pm. Learn more.
April 18: BVN, the national breast cancer association, screens In the Family as part of a conference on breast and ovarian cancer in Nieuwegein. Visit www.brca.nl or the click here for the English page.
We're thrilled to share that on March 24, In the Family screened to an audience of over 75 people at the National Institutes of Health (NIH) in Bethesda, Md. Filmmaker Joanna Rudnick was honored to speak on a panel with NIH experts following the film. The National Human Genome Research Institute’s Education and Community Involvement Branch and the National Cancer Institute’s Office of Advocacy and Relations hosted the event.
On March 17, Joanna Rudnick will speak at the Ann Arbor District Library following a screening In The Family. The free event is the first in a series of health research forums hosted by the Michigan Institute for Clinical and Health Research of the University of Michigan Health System.
Joanna and a panel of specialists from the UM Comprehensive Cancer Center will answer questions about cancer and genetic testing.
Sun. March 8: The week starts off with In The Family's Israeli television premiere! The film airs at 9:30pm on Channel 8.
Tues. March 10: Catch a screening of In The Family at University of Chicago's Doc Films at 7:00pm.
Wed. March 11: Hear Joanna Rudnick at 12:00pm ET on Genetic Alliance's Webinar, Genetics and Media: The Full Portrait. Joanna and two other presenters will share their experiences with bringing genetics to the public, suggesting creative ways to use media to describe human variation and its possibilities. Register for the Webinar
Check out the latest issue of MAMM magazine to see Joanna on the cover and read Spotlight on BRCA: A Filmmaker Turns the Lens on Herself.
Joanna heads to Philadelphia this weekend to speak at the Abramson Cancer Center of the University of Pennsylvania, followed by March screenings at the University of Michigan and the University of Virginia. Stay tuned for more campus events in 2009!