Screening & Discussion: "In the Family"

Thursday, Feb. 11 @ 6:30 p.m. -- Room 129 at Yale Law School

Sponsored by the American Civil Liberties Union Women’s Rights Project, the American Civil Liberties Union of Connecticut, the Information Society Project at Yale Law School, and the YLS Law and Health Initiative.

www.inthefamilyfilm.com

At 31, filmmaker Joanna Rudnick faces an impossible decision: remove her breasts and ovaries or risk incredible odds of developing cancer.

Armed with a positive genetic test result that leaves her essentially 'a ticking time bomb', she balances dreams of having her own children with the unnerving reality that she is risking her life by holding on to her fertility. In The Family follows Joanna as she takes us on a journey through the unpredictable world of predictive genetic testing.

Turning the camera on herself, Joanna bares her conflicting emotions about preventative surgery and the potential consequences. Turning the camera on her new relationship, she and her partner capture a young couple falling in love in the shadow of the mutation. Turning the camera on the company that owns the patents to the BRCA genes, she questions their control over access to the test. Along the way, she looks to other women and families dealing with the same unbelievable information.

Intensely personal and timely, In The Family is a groundbreaking investigation that attempts to answer the question: How much do you sacrifice to survive?

EVENT DESCRIPTION

The screening will be followed by a panel discussion addressing the implications of gene patents for access to health care. Refreshments will be served. Panelists include:

Christopher Mason, Weill Cornell Medical College of Cornell University

Ellen Matloff, Genetic counselor and plaintiff in the breast cancer gene patent challenge

Sandra Park, ACLU Women’s Rights Project Attorney

Ady Barkan, Yale Law School

This event is a collaboration with P.O.V., PBS' award-winning nonfiction film series; more information available at http://www.pbs.org/pov/.

COMMENTS ON FILM

Interlaced with the personal stories of women with the genetic predisposition for breast and ovarian cancer are interviews with the scientists who discovered the link between BRCA1 and BRCA2 and cancer.

At one point, filmmaker Joanna Rudnick interviews the founder Founder and Chief Scientific Officer of Myriad, Dr. Mark Skolnick. Myriad Genetics is the biopharmaceutical company that owns the patent to BRCA1 and BRCA2, two genes that help determine a patient’s risk of developing breast cancer and ovarian cancer.

One of Dr. Skolnick comments elicited a particularly strong reaction from the viewing audience here at Yale. In response to Joanna’s suggestion that the BRCA1 patent was Myriad’s most controversial, Dr. Skolnick  stated, “There is no controversial patent. It is all very easy to understand if you take the time.”

Later, after Joanna questioned her further about whether genes that exist in nature should be patented, Dr. Skolnick asserted, “I guarantee you [women] would not be being tested if it weren’t for Myriad … We’ve taken every problem that comes up and solved it because we have a commercial interest.” He did acknowledge, however, that the $3,000 dollars that costs to have the tests should perhaps be decreased.

A short video of just the scene with Dr. Skolnick can be found here: http://www.huffingtonpost.com/joanna-rudnick/aclu-files-case-challengi_b_203593.html

DISCUSSION WITH PANELISTS

Panelists at Film ScreeningSandra Park, ACLU Women’s Rights Project Attorney, opened the discussion on gene patenting following the showing of the film. She is involved in the lawsuit against Myriad, Association For Molecular Pathology et al v. United States Patent and Trademark Office et al, filed in 2009 in the district court of the Southern District of New York.

This case, initiated by the ACLU, is the first case in the United States about whether genes should be patentable subject matter. Sandra Park described the various claims, including both statutory and Constitutional claims, featured in the lawsuit. She argued that these patents on human genes do not further the progress of science.

Ellen Matloff, genetic counselor and plaintiff in the breast cancer gene patent challenge, described how the cost of the test has increasingly gone up during the last decade despite the underlying genomic technologies becoming cheaper and cheaper. She also described the problems with interpreting genetic tests. For example, some women whose tests results were misinterpreted had their breasts removed despite not having the mutation. Other women ended up dying from breast cancer despite thinking that their tests had come up negative. Ellen Matloff refuted Dr. Skolnick's claim in the film that tests are available because of Myriad. She claimed that many genetic counselors were administering the tests for BRCA1 and BRCA2 before Myriad began to enforce its patents.

Christopher Mason, from Cornell University, described his involvement in the gene patenting case. He also suggested that the ability of university researchers to study patented genes in the course of academic research is unclear. He suggested that in a few years it will be possible to sequence each person's genome for a few hundred dollars. If the gene patenting issue is not solved, it is possible that we will get our sequences with large sections (those that include patented genes) redacted.

Ady Barkan, a 3L at Yale Law School, then described the relation of gene patenting to the issues that face a YLS student group, Universities Allied for Essential Medicines (UAEM), in which he is involved. He raised the issue of monopoly pricing for pharmaceutical companies. The goal of UAEM is to induce governments to sell drugs cheaply in the third world, while charging monopoly prices in the United States. This contrasts with the goals of the ACLU in the Myriad case, which is to eliminate patents for genes. Sandra Park responded to Ady's comments, stating that studies show that the financial incentives associated with patents do not further the discover of genes or the availability of genetic testing. For pharmaceuticals, which are so expensive to produce and push through the government's approval process, patents are more appropriate than for for human genes.

Sandra Park suggested that the 1980 case of Chakrabarty supports the opinion of the ACLU. There have been many cases that concern the purification of natural products. Some of these seem to support that ACLU, some do not. This issue, whether isolated DNA is patentable, will likely be the key to the Myriad case. The process of isolating DNA was well known at the time that Myriad isolated BRCA1 and BRCA2. The only thing new in Myriad's patent claim is the sequence itself, which should perhaps be considered a natural product or law of nature, and therefore unpatentable.

The public awareness raised by the Myriad case could lead to legislation on gene patenting even if the lawsuit is unsuccessful. The issue of whether a correlation could be patented, that is, whether it is a law of nature, was granted certiorari and then dismissed as improvidently granted in a previous case. But Justices Breyer's dissent from the dismissal suggests that at least some on the Supreme Court are resistant to the idea that correlations can be patented.

Comments

This was a really well-done movie, even apart from the A2K connection! One thing I found really interesting was that the Myriad representative defended the legitimacy of their patent on the gene in a counter-intuitive way. He pointed not to the incentives and investment in the research that allowed Myriad to win the race to pinpoint the exact gene. But to the investment that they had made in "educating the market." Being able to charge a high amount for the test gave them a commercial interest in spending the money to advertise to doctors and patients to do the test. This, not the research, was the key ingredient he suggested gene patents were necessary to preserve. But the high cost is clearly counterproductive from the standpoint of giving women good information. Many can't afford the test, and some who can, get inconclusive results, because there aren't enough other people with their type of mutation that have been tested yet... a particular issue for African-American patients. So are gene patents the right way to raise money for patient and doctor education?