| Subscribe to our weekly newsletter here. Not to mention that the majority of families diagnosed with SMA have NO prior family history or reason to proactively ask to be tested prenatally or post. Athena Diagnostics owns the patent to the simple SMA DNA test. “ACLU Sues Over Patents on Breast Cancer Genes”, 200 Tees Donated to Healthcare Heroes During Covid. I know there are many arguments on both sides of this coin, pros and cons, and many factors at play. Today on the show, the story of the rise and fall of gene patents, and how the Supreme Court answered the question: Who do your genes belong to? Trust me, having to fight Health Net for full payment of a simple DNA test that just diagnosed my daughter's terminal, degenerative disease was like rubbing salt in our wounds. Meredith Knight | September 9, 2014. Plain and simple. His clients were a healthy mother and a father who was HIV positive. 10/27/2015 12:36 pm ET Updated Oct 27, 2016 By Diana Brazzell, Co-Founder & Executive Editor, Footnote. NEWS FLASH Health Net, Athena is the ONLY laboratory that performs the test. You know what's a patently good idea? As an aside, even with a positive diagnosis, we still had to fight and fight and fight our insurance company, Health Net, to get them to pay for the full amount of the Athena SMA DNA test because they claimed we used an “out of network” provider. It will be very interesting to see how this case plays out as it could have a dramatic impact on thousands of diseases, including Spinal Muscular Atrophy (SMA). But, there needs to be a middle ground between the current hyper-capitalistic approach and a more humane, people centric approach. For a while, Big Biotech patented 20% of the human genome. He engineered the genes of their twin girl babies so they would be resistant to HIV.. After all, we all should be focused on saving lives and treating and curing diseases, not just what we — as individuals, organizations, and corporations — will get out of the deal. In 2005, Chris Hansen, a lawyer at the ACLU, heard that a biotech company called Myriad Genetics had identified a gene responsible for most types of inherited breast and ovarian cancer... and then patented it. Wednesday, July 29, 2009 By Maureen Cavanaugh, Natalie Walsh. The positive SMA test dramatically changed our medical course of action and why that has to be justified to the insurance company is mind boggling. He and two others, Zhang Renli and Qin Jinzhou, were convicted of gene editing fetuses. It is unclear who really owns the rights to any gene,” says Dr. Rosenfeld. Tests for the Breast Cancer gene, selected in the above lawsuit, SMA, and many other diseases have now been impacted by this decision. Who owns your DNA? It’s not who you think. Music: "Smoke and Mirrors," "Cosmic Cowboy," and "Jamrock We A Come From. A 1980 U.S. Supreme Court decision about gene patenting paved the way for genetic related patents to be granted by the U.S. Patent and Trademark Office. Come for the deoxyribonucleic acid — stay for the chocolate chip cookies and baseball bats. It's Big Biotech versus the right to the information encoded in our very DNA, and how that fight went all the way to the Supreme Court. As a result, the test is controlled by Athena, as is the cost of the test, which means it is expensive. Aired 7/29/09 . This has a real, direct impact on the prevalence of carrier screening and how diagnostic tests are performed — especially when you couple an expensive, protected test with the workings of a for-profit U.S. health insurance industry. This post was originally published on Footnote, a website that brings academic research and ideas to a broader audience. In hindsight, I know that the simple Athena SMA test was NOT ordered earlier for Gwendolyn for a variety of reasons, but one of them was definitely the high cost of the test and our doctor's knowledge that if she did not have SMA our insurance company would most likely not cover it. And Chris thought that this was definitely not okay. Who owns your genes, anyway? Athena Diagnostics owns the patent to the simple SMA DNA test. Subscribing to our Newsletter. Subscribe to our show on Apple Podcasts, Pocket Casts and NPR One. “ACLU Sues Over Patents on Breast Cancer Genes” – read the full CNN story here. ", Find us: Twitter / Facebook / Instagram / TikTok. Ultimately, it is argued, this has stalled the free flow of information, thus impacting the ability to make informed decisions about our health. Gwendolyn was ultimately given the test, but with little time to spare given that her condition was deteriorating rapidly. Who Owns Your Genes? Who Owns Your Genes? As a result, the test is controlled by Athena, as is the cost of the test, which means it is expensive. Then a lawyer took them to the Supreme Court. Had we waited just two more weeks to perform this simple blood test, Gwendolyn would not be with us today. Nearly 20 percent of the human genome is patented by … And, after all, many of these genes and tests would not have been discovered without the ingenuity of these research firms and universities and the use of their capital, both financial and intellectual. To be clear, I agree that these entities should somehow be compensated for their discoveries. Who Owns Your Genes? Instead we rely on doctors to make recommendations, but doctors are being forced to weigh caution against cost. Your Health: Implications of the Human Genome Project March 17, 2000 U.S., Britain urge free access to human genome data March 14, 2000 British firm applies for patent on gene … With its patent, Myriad could effectively block anyone else from doing comprehensive testing or in some cases even doing research on the gene. Dr. Audio. You might think that, if anybody owns your genes, it’s you, but if you know anything about your genes it will be because of professional gene testing. Chris Maddaloni/CQ-Roll Call, Inc via Getty Imag, We Insist: A Timeline Of Protest Music In 2020, See Planet Money sponsors and promo codes.

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