Patenting Life

by Michael Crichton You, or someone you love, may die because of a gene patent that should never have been granted in the first place. Sound far-fetched? Unfortunately, its only too real. Gene patents are now used to halt research, prevent medical testing and keep vital information from you and your doctor. Gene patents slow the pace of medical advance on deadly diseases. And they raise costs exorbitantly: a test for breast cancer that could be done for $1,000 now costs $3,000. Why? Because the holder of the gene patent can charge whatever he wants, and does. Couldnt somebody make a cheaper test? Sure, but the patent holder blocks any competitors test. He owns the gene. Nobody else can test for it. In fact, you cant even donate your own breast cancer gene to another scientist without permission. The gene may exist in your body, but its now private property. This bizarre situation has come to pass because of a mistake by an underfinanced and understaffed government agency. The United States Patent Office misinterpreted previous Supreme Court rulings and some years ago began to the surprise of everyone, including scientists decoding the genome to issue patents on genes. Humans share mostly the same genes. The same genes are found in other animals as well. Our genetic makeup represents the common heritage of all life on earth. You cant patent snow, eagles or gravity, and you shouldnt be able to patent genes, either. Yet by now one-fifth of the genes in your body are privately owned. The results have been disastrous. Ordinarily, we imagine patents promote innovation, but thats because most patents are granted for human inventions. Genes arent human inventions, they are features of the natural world. As a result these patents can be used to block innovation, and hurt patient care. For example, Canavan disease is an inherited disorder that affects children starting at 3 months; they cannot crawl or walk, they suffer seizures and eventually become paralyzed and die by adolescence. Formerly there was no test to tell parents if they were at risk. Families enduring the heartbreak of caring for these children engaged a researcher to identify the gene and produce a test. Canavan families around the world donated tissue and money to help this cause. When the gene was identified in 1993, the families got the commitment of a New York hospital to offer a free test to anyone who wanted it. But the researchers employer, Miami Childrens Hospital Research Institute, patented the gene and refused to allow any health care provider to offer the test without paying a royalty. The parents did not believe genes should be patented and so did not put their names on the patent. Consequently, they had no control over the outcome."