Who owns your genes?
Imagine that your doctor has suggested a genetic test for mutations that can cause hereditary breast cancer. This simple test could give you life-saving information. But you can't have it. Because you don't happen to have several thousand dollars just lying around. Why would you need thousands of dollars for one test? Because a private company actually owns a PATENT on the genes involved. And, for access to those genes, they'll charge as much as they can get away with. You wouldn't think something occuring naturally could be patented, right? Well, it turns out that about 20% of all human genes, including genes associated with Alzheimer's and asthma, are patented and held by private companies. And the ACLU hopes to change that, with a lawsuit filed last month against two private companies that hold the patents for the genes that cause hereditary breast and ovarian cancer. The hope is that this will not only overturn these particular patent rights, but that the courts will rule that giving private companies patents over large portions of the human genome is unconstitutional. The ACLU says that patenting the genes limits the free flow of information, and is therefore in violation of the First Amendment. In an article at CNN.com, ACLU Executive Director Anythony D. Romero summed it up: "Knowledge about our own bodies and the ability to make decisions about our health care are some of our most personal and fundamental rights. The government should not be granting private entities control over something as personal and basic to who we are as our genes." It's ridiculous that these companies were able to get these patents in the first place. After all, it's not like they created anything new—all they did was observe something that already existed. And now they can decide who has access, which of course narrows the pool of researchers searching for a cure. Outside researchers must request permission before they can even look at the genes. That's bad enough. But it gets even dicier when you consider that this question of access could be a question of life or death for some women. About 5-10% of breast cancer cases are hereditary, and many of those cases are linked to two particular genes. Myriad Genetics, the company that holds patents for the genes BRCA1 and BRCA2 (which often cause breast and ovarian cancer), charges $3,000 a pop for testing. Your doctor might recommend genetic testing to find the mutations that cause cancer, but if you can't cough up thousands of dollars, you might never know in time to make crucial health decisions. Holding patents on these genes means Myriad stands to make a lot of money. In protecting a potential cash cow, who knows how long they're drawing out the search for a cure— just think of all the research that could be underway if outside scientists didn't have to go through all of the business red tape. And just think of all the women who could be making lifesaving choices—if they could afford the testing. Source:
"ACLU sues over patents on breast cancer genes." CNN (www.cnn.com), 5/12/09. | 
