There is something fundamentally wrong with allowing companies to own the rights to pieces of the human genome. 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. Today we are "Taking Back Our Genes."
Stand with us. First visit https://www.aclu.org/take-back-our-genes to learn more about our case on gene patenting and check-out our video and slideshow that highlight a handful of the heartbreaking human results of gene patenting.
Then get involved. Tell us how gene patenting has impacted you or a loved one by submitting a photo and sharing your story.
In 2009, 20 professional medical associations, geneticists, breast cancer and women's health groups, and patients filed a lawsuit charging that patents on two human genes associated with hereditary breast and ovarian cancer (BRCA1 and BRCA2) are invalid and unconstitutional.
Myriad Genetics, which controls the patents on the genes, is able to exclude others from testing and conducting research on the patented genes. Patients who want to obtain genetic testing to determine whether they are at risk for hereditary breast and ovarian cancer have only one option for full genetic sequencing: Myriad Genetics. Myriad decides what tests are offered, which mutations are included, at what cost, and what research can be conducted without fear of patent infringement liability.
By allowing companies to block access to alternate tests and second opinions, charge thousands of dollars for their tests, and chill scientific research, gene patents are threatening women's – and all patients' – rights.
No corporation should be able to claim ownership of a person's own genetic information.
Recently a divided appeals court ruled that companies may patent the genes, reversing a trial court's invalidation of the patents. The ACLU and the Public Patent Foundation, which represents the plaintiffs, have petitioned the Supreme Court to hear an appeal of the case. The American Medical Association, AARP, Kaiser Permanente, and Facing Our Risk of Cancer Empowered were among over 30 groups and scholars that filed briefs in support of our petition.
You can help spread the word about the dangers of allowing companies to own our genetic information. Please help us collect stories by sharing our campaign widely.