BRCA

The U.S. Supreme Court is about to decide whether a private company can own a part of your body.

Currently, a company called Myriad Genetics “owns” two genes known as BRCA 1 and BRCA2 –or Breast Cancer 1 and Breast Cancer 2. Women with certain mutations in these genes have a strong chance of getting breast or ovarian cancer.

This has very dangerous implications for women’s health, and it’s illegal. The ACLU has filed a lawsuit challenging the validity of these gene patents. On April 15, 2013, the ACLU argued the case before the U.S. Supreme Court. We expect a decision this summer.

Read more about BRCA on our FAQ page here.

Are Human Genes Patentable? Supreme Court Will Decide

By Sandra S. Park, ACLU Women's Rights Project at 3:54pm

Today, the Supreme Court granted our petition seeking review of an appellate court’s 2-1 ruling upholding patents on two human genes associated with hereditary breast and ovarian cancer.  We represent 20 plaintiffs, including geneticists, patients, and scientific organizations representing over 150,000 pathologists and laboratory professionals.   The case is the first challenging whether human genes can be patented.

Supreme Court: Liberate the Human Genome!

By Sandra S. Park, ACLU Women's Rights Project at 1:14pm

Today, we 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 percent of which have been patented.  We all have these genes, but women with certain genetic mutations are estimated to have up to an 85 percent risk for breast cancer and 50 percent 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 – the 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. 

My Genes Are My Own

When I was diagnosed with breast cancer, patent law was the last thing on my mind. Then again, I didn’t know that one company could have an exclusive right to the genetic information that could save my life.

James Watson, Discoverer of DNA: Patenting Human Genes Is “Lunacy”

By Sandra S. Park, ACLU Women's Rights Project at 12:11pm

Recently, Dr. James Watson filed an amicus brief opposing gene patents in our lawsuit challenging the patents on two human genes associated with hereditary breast and ovarian cancer. Dr. Watson, along with Francis Crick, identified DNA’s ability to create life through its double helical structure and its information-coding sequences in 1953. His brief explains why, from the perspective of a scientist whose work laid the foundation for all genetic research, gene patenting is “lunacy.”

Celebrate DNA Day by Taking Back Your Genes

By Sarah Roberts, Speech, Privacy and Technology Project at 4:05pm

Tuesday is National DNA Day, which commemorates the discovery of DNA's double helix structure by James Watson and Francis Crick in 1953, as well as the successful completion of the Human Genome Project in 2003. In honor of National DNA Day, the National Human Genome Research Institute will be hosting an online chat from 8 am to 5 pm Eastern today, in which experts will answer questions about DNA in real time.

Exclusive Patents on the BRCA Genes: Adding Burden to an Already Overburdened Cancer Community

By Sue Friedman, Executive Director, Facing Our Risk of Cancer Empowered (FORCE)

As part of the ACLU's Taking Back Our Genes campaign , guest blogger Sue Friedman, the Executive Director of FORCE, describes the adverse impact the exclusive patents on BRCA1 and BRCA2 have on the cancer community.

Hands Off My Genes

By Rachel Marshall, Washington Legislative Office at 5:21pm

Most teenagers don't sit around contemplating the need for genetic testing. They may not even know the purpose of genetic testing. That all changed for me when I was 13, shortly after my baby brother celebrated his first birthday. He was diagnosed with a disease called Spinal Muscular Atrophy (SMA), a genetic motor neuron disease that affects the muscles that control crawling, walking, head and neck control, and swallowing. In order to inherit SMA, both parents of a child have to be carriers of a mutated SMN1 gene. If both parents are carriers, their child has a one in four chance of being affected with SMA. While my sister and I are perfectly healthy, there is a chance that we could both be carriers of the mutated SMN1 gene. My brother's doctors have strongly advised that, should we choose to have children, our partners should at least be tested to see if they are carriers for the gene. It was the first time the concept of genetic testing came across my radar, but it certainly wouldn't be the last.

Take Back Our Genes – Join the Fight Against Gene Patenting

We can bring an end to gene patenting to ensure the human genome, and all DNA found in nature, is open to everyone for the benefit of everyone – not just corporate profits.

Today We Take Back Our Genes

By Alicia Gay, ACLU at 12:59pm

Today the ACLU is launching a campaign to illustrate the personal harms of gene patenting by showcasing those who have been or may be directly impacted by this practice.

ACLU Asks Supreme Court to Hear Gene Patents Case

By Sarah Roberts, Speech, Privacy and Technology Project at 5:49pm

Today, the ACLU petitioned the Supreme Court to hear our case challenging patents on two human genes related to breast and ovarian cancer.

The case, Association for Molecular Pathology, et al. vs. Myriad Genetics, et al., was filed in 2009 on behalf of medical associations, geneticists, genetic counselors, patients, and breast cancer and women's health groups, which all have been negatively impacted by Myriad Genetics’ patents on the BRCA1 and BRCA2 genes.

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