Liberate the Breast Cancer Genes

ACLU Presents How can it be that a company controls genes?
How is that possible? We all know people who have experienced breast
cancer. There are places where the patent system has
gone too far. That too much patent protection can, in fact, trample our civil liberties. Screen says: LIBERATE
The breast cancer gene Mothers and daughters are on the front line
of the fight against breast cancer. It’s also a high-tech battle. To win..scientists need the freedom to research
genes and develop diagnostic testing. But, one company, Myriad, decides who gets to test
and research two genes associated with breast cancer. Screen shows: Distribution of mutations
BRCA2 Gene (exons only) — ATG start –6174 delT Ashkenazi– genomic DNA
BRCA2 protein Main functional domains — Amino acids — transcriptional activation–BRC repeats
— RAD51 binding–Ovarian cancer susceptibility BRCA 1 and 2..All of us, men and women, have
these genes. That means that the government has put a patent on a piece of the human body
when it gave Myriad a patent on the BRCA genes. Chris Hansen, ACLU
First Amendment Attorney It doesn’t make sense that the government
should be able to give people control of human genes. It’s been a long standing rule of patent
law that you can’t patent a product of nature or a law of nature. Mutations on the BRCA
genes mean increased risk of breast and ovarian cancer. Elizabeth Ceriani had breast cancer that resulted
in a double mastectomy. If she has a mutation on her BRCA gene, it could signal more cancer
to come. EC: As a single mother, I would like to see
my daughter go off to graduate from college. And, if I have a mutation, there’s a huge
chance that I’ll end up with ovarian cancer in the immediate future. But because the government granted a patent
on both the genes and any mutations, Myriad is the only place Elizabeth can turn to see
if she’s more likely to get ovarian cancer. Screen shows:
Myriad Genetics Salt Lake City, Utah EC: It’s like the government created this
monopoly by giving Myriad the patent in the first place. I don’t know what they were thinking. Like many women, Elizabeth can’t afford the
more than $3000 Myriad wants for the test, and getting it covered by insurance can be
complicated or impossible. EC: I don’t even have a credit card with $300
that I could just charge and have it be done. I need to have that test, so I can get them
out if I need to before anything happens. I don’t really like those odds. Dr. Wendy Chung, a clinician and geneticist
at Columbia University, says there are problems with the patents beyond cost. The patents
limit information that’s crucial to woman and their doctors.
Dr. Wendy Chung Columbia University
So for woman, as they are trying to make these major life decisions, it’s very helpful for
them to have a second opinion, much as they would get a second opinion for a surgeon.
By having only a single laboratory offering that testing, it’s impossible, really, to
get that second opinion either in the way that the test is performed or the interpretation
of such results. And, that’s been problematic for women in the field. Genae Girard
Austin, Texas You know, ovary removal, is… you are deciding
whether or not you are going to have children. And, to me that’s a huge, huge decision. I
did not have the option to go to anybody else to validate the test. And, that is very scary
when you’re a patient. Minority women have an additional concern,
genetic variants of uncertain significance. Initial gene studies focused on white women.
And, now the patents make it more difficult to learn what some mutations mean in women
of color because Myriad has total control over researchers access to those mutations. Runi Limary
Austin, Texas It’s really frustrating not to be able to
have this information because I would love to be able to find out why, not just for myself
but for other Asians, also. I believe in being proactive about my health and having that
patent mix really makes it difficult to be very proactive. Tania Simoncelli, ACLU
Science Advisor They own not only the gene, they own any future
test, any future drug, any future therapy. So it means that we are putting our trust
in one single company. We’re asking the court to declare the patents
invalid. If the court does that, then the tens of thousands of researchers around the
country, who have the technical ability to look at breast cancer genes, can do that freely. Barbara Brenner, Director
Breast Cancer Action We need better options. And, the research
on these genes might get us to that; but, not if Myriad holds all the cards. Sandra Park, ACLU
Women’s Rights Attorney As a women’s rights advocate, I think we are
really concerned any time we see the government interfering with something so elemental as
women’s bodies. CH: We don’t do cases in order to win an abstract
principal. We do cases that are going to affect people’s lives, and this case will affect
people’s lives. BB: So, who but the ACLU? Screen shows:
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