Who owns your genes?
One of the scariest moments experienced by all too many of us is the call from our doctor saying that we should come in for additional cancer screening.
So imagine how Newton mother Lisbeth Ceriani felt when her doctors told the 42-year-old breast-cancer survivor and mother of an 8-year-old that she should be tested for the ovarian cancer gene, only to learn that a private corporation, Myriad Genetics, owns the patent on the gene in question (the BRCA gene) and was charging more for diagnostic testing than Ceriani could afford to pay.
Fortunately for Ceriani and the rest of us, a Federal judge this week upheld a lawsuit filed by the ACLU and the Public Patent Foundation challenging the government practice of granting patents to corporations that try to capture and "own" the DNA in our bodies.
The decision is good news not only for women at risk for breast and ovarian cancer, but also for men who carry the gene mutation that raises their risk for prostate, pancreatic, and other types of cancer. Since 20 percent of all human genes have already been patented and may be affected by the Court's ruling, the decision also offers hope for new research and access to treatment for people afflicted with Alzheimer's disease, muscular dystrophy, colon cancer, asthma and other illnesses.
The ACLU filed the case on behalf of patients, researchers, genetic counselors, cancer survivors, scientific associations representing 150,000 geneticists, and women's health groups, among others. It makes a simple but elegant claim: DNA should not be patented because it is a "product of nature" and thus cannot be owned and monopolized by a corporation.
No wonder plaintiffs and supporters of the case include groups as diverse as the March of Dimes Foundation, the Massachusetts Breast Cancer Coalition, the National Organization for Rare Disorders, the National Tay-Sachs & Allied Diseases Association, the American Medical Association, the Boston Women's Health Collective, Greenpeace, the Council for Responsible Genetics, and the World Council of Churches.
The danger of letting corporations patent human genes is that they can use the monopoly created by patents to deny access to diagnostic and therapeutic treatments to those who can't pay a premium. Patents on human genes also choke off a patient's ability to get a second opinion (before, say, removing ovaries or a prostate) and close off scientific research by other corporations or academic institutions.
The decision -- which is sure to be appealed -- has raised dire warnings from some corners of the pharmaceutical and venture capitalist sectors, as well as from the patent bar. They argue that patents encourage research and innovation by making it profitable for corporations to engage in the financially risky business of developing new diagnostic tools and therapies, and warn that the Court's decision will thus hinder innovation.
But this case is different. It's not about denying corporations the right to patent specific tests, methods, or drugs. These are inventions that deserve and will continue to receive patent protection. Indeed, the U.S. Constitution gives Congress the power to award patents in order to promote the "progress of science and the useful arts, by securing, for limited times to authors and inventors the exclusive right to their writings and discoveries."
Patenting genes, on the other hand, does not promote scientific progress but merely blocks all development of further testing and research.
No human being or corporation invented human genes. Arguably, that was the work of a higher authority and thus our genes belong to each of us. Neither corporations nor the patent office should be allowed to take that away.
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