Blog of Rights

Tell Congress: My Genes Aren't For Sale

By Sandra Fulton, ACLU Washington Legislative Office at 4:37pm

In May 2008, Lisbeth Ceriani — a single mom with an 8-year-old daughter — was diagnosed with breast cancer at age 42. The doctors found multiple tumors so she immediately underwent a double mastectomy, chemotherapy, and radiation. After reviewing her medical and family history, her doctors agreed that she should have a genetic test to determine if she was likely to develop hereditary ovarian cancer. If the test discovered that she had a mutation associated with cancer, her doctors would recommend removing her ovaries as well. Unfortunately, Lisbeth was denied this potentially life-saving test because the biopharmaceutical company, Myriad Genetics, held a patent on the BRCA 1 and 2 breast cancer genes.

In 1992, the U.S. Patent Office started issuing patents on human genes to private companies. A patent holder can prevent anyone from studying, testing, or even looking at a gene. So when Myriad refused a contract with Lisbeth's insurance company, because it believed the reimbursement level was too low, Lisbeth and her doctors had no recourse. Myriad is the only lab in the country that can legally perform the genetic test she needed. Currently, nearly 20 percent of human genes are patented and vital scientific research and genetic testing has been delayed, limited, or even shut down due to concerns about patents.

In addition to interfering with medical care, patents on genes are unlawful. In a lawsuit we filed last year against Myriad and the USPTO, the ACLU asserted that genes are a product of nature and therefore should not be patentable. Patenting genes linked to breast cancer — or any other gene — is akin to issuing a patent for gold that has been dug out of the earth. In March 2010, a federal court in New York agreed, voiding the patents issued to Myriad on the breast cancer genes.

Rep. Xavier Becerra (D-Calif.) introduced H.R. 977, the "Genomic Research and Accessibility Act" during the 110th Congress to eliminate gene patents and would like to reintroduce a new version of the bill this year. But Rep. Becerra needs support from colleagues on both sides of the aisle. Click here to ask your Member of Congress to contact Rep. Becerra and sign on as a cosponsor of this important piece of legislation.

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