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). Dr. Audio. I know there are many arguments on both sides of this coin, pros and cons, and many factors at play. 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. 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. ", Find us: Twitter / Facebook / Instagram / TikTok. Wednesday, July 29, 2009 By Maureen Cavanaugh, Natalie Walsh. For a while, Big Biotech patented 20% of the human genome. To be clear, I agree that these entities should somehow be compensated for their discoveries. Athena Diagnostics owns the patent to the simple SMA DNA test. Athena Diagnostics owns the patent to the simple SMA DNA test. 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. Then a lawyer took them to the Supreme Court. And Chris thought that this was definitely not okay. 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. 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. This post was originally published on Footnote, a website that brings academic research and ideas to a broader audience. Instead we rely on doctors to make recommendations, but doctors are being forced to weigh caution against cost. Who Owns Your Genes? His clients were a healthy mother and a father who was HIV positive. You know what's a patently good idea? NEWS FLASH Health Net, Athena is the ONLY laboratory that performs the test. Who owns your genes, anyway? Tests for the Breast Cancer gene, selected in the above lawsuit, SMA, and many other diseases have now been impacted by this decision. 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? Aired 7/29/09 . As a result, the test is controlled by Athena, as is the cost of the test, which means it is expensive. 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. 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. “ACLU Sues Over Patents on Breast Cancer Genes”, 200 Tees Donated to Healthcare Heroes During Covid. Music: "Smoke and Mirrors," "Cosmic Cowboy," and "Jamrock We A Come From. “ACLU Sues Over Patents on Breast Cancer Genes” – read the full CNN story here. But, there needs to be a middle ground between the current hyper-capitalistic approach and a more humane, people centric approach. Meredith Knight | September 9, 2014. 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. As a result, the test is controlled by Athena, as is the cost of the test, which means it is expensive. Gwendolyn was ultimately given the test, but with little time to spare given that her condition was deteriorating rapidly. 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. Who Owns Your Genes? Ultimately, it is argued, this has stalled the free flow of information, thus impacting the ability to make informed decisions about our health. Who owns your DNA? With its patent, Myriad could effectively block anyone else from doing comprehensive testing or in some cases even doing research on the gene. Nearly 20 percent of the human genome is patented by … Subscribing to our Newsletter. 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. Who Owns Your Genes? He and two others, Zhang Renli and Qin Jinzhou, were convicted of gene editing fetuses. It’s not who you think. 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. Had we waited just two more weeks to perform this simple blood test, Gwendolyn would not be with us today. Come for the deoxyribonucleic acid — stay for the chocolate chip cookies and baseball bats. Plain and simple. | Subscribe to our weekly newsletter here. 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. 10/27/2015 12:36 pm ET Updated Oct 27, 2016 By Diana Brazzell, Co-Founder & Executive Editor, Footnote. 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. 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 … It is unclear who really owns the rights to any gene,” says Dr. Rosenfeld. He engineered the genes of their twin girl babies so they would be resistant to HIV.. Subscribe to our show on Apple Podcasts, Pocket Casts and NPR One.

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