As Supreme Court debates gene patenting linked to hereditary breast and ovarian cancer, POV and Kartemquin release "In the Family" free online
On April 15, 2013, the Supreme Court of the United States will hear a landmark case on the patentability of genes linked to hereditary breast and ovarian cancer.
To raise public awareness on the issues involved, the documentary In the Family – which helped spark the original case – will be streamed online for free to coincide with the hearing. In the film director/producer Joanna Rudnick tells her story of discovering she carries the BRCA gene mutation. She interviews other cancer “pre-vivors,” and in doing so is led to Myriad Genetics, sole patent holder of the BRCA genes and sole provider of genetic testing for mutations in the genes.
In the Family will be exclusively streamed online at http://www.pbs.org/pov/inthefamily, launching with the Supreme Court hearing of the ACLU’s challenge to the BRCA genes on April 15, 2013 for 30 days (through May 15, 2013), followed by a second streaming window of 30 days around when the verdict is announced.
Rudnick’s exposing video interview with Myriad’s founder Mark Skolnick – in which she questions why the cost of the test is going up despite advances in technology – remains the only on-camera comment Myriad has given on these issues since the case was launched.
The Emmy-nominated film originally aired on PBS documentary series POV in October 2008 and was produced by documentary powerhouse Kartemquin Films (Hoop Dreams, The Interrupters). It won multiple awards and has since screened and been broadcast around the world, including a series of discussion-based special viewings organized by the ACLU and the advocacy group FORCE (Facing Our Risk of Cancer Empowered) to raise awareness about the BRCA patents and their consequences on high-risk women and their families.
In 2009, after the film aired on POV, the ACLU and the Public Patent Foundation along with a long list of plaintiffs brought a case against Myriad before a district court in New York that challenged the validity of patents on the BRCA 1 and BRCA 2 genes. A series of verdicts with both sides winning victories and appealing the losses followed. It is now up to the Supreme Court to decide whether or not human genes should be patented.
“Re-releasing In the Family online will allow the public – and especially women and families affected by BRCA mutations – to learn about these issues as the Supreme Court debates them,” said Rudnick. “I was shocked and angry when I found out these genes were patented and that one company could decide who gets access to testing and who can do research on the gene. Many people don't realize that 20% of the human genome is already patented. I want better answers for my daughters and feel that these patents could be standing in the way.”
Rudnick – currently in treatment for breast cancer – will write a blog for POV about the consequences of gene patenting on families with hereditary breast and ovarian cancer, with an update to the film’s audience about her life and health five years since the film’s release. She was breastfeeding her second daughter when she found her breast cancer, less than a week after a move to the Bay Area with appointments pending for prophylactic surgeries. In less than a month from the blog post, Rudnick will undergo a bilateral mastectomy.
“Going public with this news is not easy,” Rudnick states. “But I am strengthened by knowing that the stigma associated both with having a genetic mutation and being a young breast cancer patient has changed dramatically even in the five years since In the Family was released. This is due in large part to groups like FORCE and a host of young women who are blogging and talking openly around these issues.”
Background on In the Family and the ACLU’s “Take Back Our Genes” Campaign:
In September 2012, the ACLU asked the U.S. Supreme Court to review an appellate court’s 2-1 ruling upholding patents on two human genes associated with hereditary breast and ovarian cancer. The case challenges patents that pose a serious barrier to using new discoveries in genetic testing and how genes influence the way cancers develop and can be treated.
BRCA1 and BRCA2 are two of the 23,000 genes in the human genome, 20% of which have been patented. We all have these genes, but women with certain genetic mutations are estimated to have up to an 85% risk for breast cancer and 50% risk for ovarian cancer. Myriad Genetics obtained patents on the “isolated” forms of the two genes, which simply means it obtained a patent on the human gene once it has been removed from the cell. It does not matter whether the genes come from you, me or any of the other 285 million people in the U.S., or whether you have a mutation or not – patents claim them all. Even though laboratories around the country are fully capable of providing genetic testing for BRCA1 and BRCA2 (and were already testing patients before the patents forced them to stop), the patents in essence give a monopoly over these genes.
As a result, Myriad has the power to dictate the cost of testing, which insurance is accepted, which mutations are looked for or excluded in testing, whether any other lab will be allowed to do testing or even confirmatory testing on these genes, whether to incorporate the latest developments in genetic testing, and what research is pursued – without competition. This is different from patenting a test; another lab would not be blocked in the same way because they could develop a new and better test without violating the first patent. Nobody can “invent” a person’s BRCA1 or BRCA2 gene.
In the Family Synopsis:
How much would you sacrifice to survive?
When Chicago filmmaker Joanna Rudnick tested positive for the “breast cancer gene” at age 27, she knew the information could save her life. And she knew she was not only confronting mortality at an early age, but also was going to have to make heart-wrenching decisions about the life that lay ahead of her. Should she take the irreversible preventive step of having her breasts and ovaries removed or risk developing cancer? What would happen to her romantic life, her hopes for a family? In the Family documents Rudnick’s efforts to reach out to other women while facing her deepest fears.
During the making of In the Family, Rudnick discovered the BRCA genes were patented and took her crew to visit Myriad and interviewed the founder and Chief Scientific Officer Mark Skolnick, challenging him on the validity of the patents and calling into question the expensive price tag on the test. During the interview, Skolnick compares the patents on the genes to patents on iPods and admits that it’s a “good question” as to why the cost of the test is increasing (now $3400) when the technology is getting faster and cheaper.
In the Family TRAILER:
In the Family official website:
Media inquires: Tim Horsburgh, firstname.lastname@example.org, 773-472-4366.
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