The latest from the Center for Genetics and Society     DONATE July 25, 2024         The Promise and Peril of CRISPR: Now Available! Look for “Untangling CRISPR’s Twisted Tales,” an essay by CGS’ Marcy Darnovsky and Katie Hasson in The Promise and Peril of CRISPR. This new edited volume, published by Johns Hopkins University Press and edited by Neal Baer, explores a range of perspectives on the potential societal impacts of gene editing technology.          The “Correlation” Between Statistics and Eugenics Aubrey Clayton, Los Angeles Review of Books | 07.18.2024 In the second essay of the Legacies of Eugenics series, Aubrey Clayton excavates the troubling correlation between the birth of statistical methods and the history of eugenics. Galton, Pearson, and Fisher made causal interpretations of statistical correlations to promote their eugenic ideas. The same interpretive errors––and eugenic logics––can be found in contemporary science. Find all of the essays in the series here.       What Is Up With the FDA? What Comes Next? Pete Shanks, Biopolitical Times | 07.18.2024 With drug companies finding creative ways to influence FDA’s choices, senior FDA officials overruling appointed experts, and the Supreme Court undercutting the agency’s authority, the future of the FDA is completely unclear.     Precious DNA: Unethical research on oppressed Uyghur population continues Isabelle Bartram, Biopolitical Times | 07.17.2024 Human rights violations against Chinese Uyghurs, a predominantly Muslim minority, have been reported frequently over the last few years. Western scientists have actively participated in genetic research that plays a role in these abuses.   Eugenics: Still a fool's errand Emma McDonald Kennedy, Biopolitical Times | 07.11.2024 Companies want to convince prospective parents that taking the “Gattaca route” of genetic testing and embryo selection will ensure their child's future––which makes it all the more urgent to recognize the eugenic threats these technologies pose.         Dawn of the Silicon Valley Superbaby Julia Black and Margaux MacColl, The Information | 07.19.2024 Commenting on the popularity of genetic screening and selection of embryos in Silicon Valley, CGS Associate Director Katie Hasson commented, “I don’t think the problem is that the rich will end up with superintelligent, superior children… but the belief that that’s what’s going on, I think, could be incredibly harmful in our society.... The danger is coming to believe that privileges come from genetics, that they’re written into their DNA in some way.” Note: this article is paywalled.   GENE EDITING | GENE THERAPY | EUGENICS ASSISTED REPRODUCTION | SURROGACY360 | STEM CELLS | VARIOUS   GENE EDITING China bans clinical research in germline genome editing as ‘irresponsible’ Alcott Wei, South China Morning Post | 07.13.2024 New guidelines released by China’s Ministry of Science and Technology prohibit heritable genome editing, including genome editing research on germ cells, fertilized eggs, or human embryos for reproductive purposes. Base Editing Tweaks Mouse Gut Microbiome, in Scientific First Julianna LeMieux, Genetic Engineering & Biotechnology News | 07.10.2024 For the first time, researchers have used base editing on the genomes of bacteria "in situ" in mice. This work is “a massive step forward that opens the door to rewriting our microbiomes for optimal health.” ‘Epigenome editor’ silences gene that causes deadly brain disorders Gemma Conroy, Nature | 06.27.2024 New research in mice shows promise for an epigenetic editing tool called CHARM, which adds a chemical tag to silence a genetic mutation that causes prion diseases, a rare set of deadly neurodegenerative disorders.   GENE THERAPY Serious errors plague DNA tool that’s a workhorse of biology Katherine Bourzac, Nature | 07.10.2024 Lab-made plasmids, the “workhorse of modern biology,” have a quality control problem. A new study found that almost half had design flaws, some significant enough to make them ineffective. Why isn’t gene therapy available to more patients? Blame millionaire prices and uncertainty as to its effectiveness Oriol Güell, El País | 07.07.2024 Issues of cost and questions of long-term safety have made it difficult for experimental gene therapies to succeed commercially, leading some companies to abandon the sector and leaving many patients disheartened. A pill to treat sickle cell disease? Compound that activates fetal gene raises new hope Robert F. Service, Science | 07.04.2024 A new drug candidate for treating sickle cell disease works by switching on fetal hemoglobin production. It could be a cost-effective alternative to promising yet costly gene therapies.   EUGENICS Disabled Bodies and Enabling The Creation of The Medical Genetics Profession Robert Resta, The DNA Exchange | 07.22.2024 Emerging out of the ableist and anti-disability structures of medicine and of society, medical genetics was developed primarily from clinical evaluation of people with genetic and congenital disabilities. JD Vance’s “Hillbilly Elegy” ignores the real Appalachian crisis it portrays Mesha Maren, Salon | 07.20.2024 JD Vance’s Hillbilly Elegy echoes the eugenics movement in depicting mental health crises as a result of “racialness” and inherited “bad traits,” but ignores the history of forced sterilization of people in Appalachia and the continued lack of mental health care in the region. Amid discrimination, Japan’s eugenics missteps could be repeated, expert warns Staff, The Japan Times | 07.10.2024 The “good intentions” behind eugenics laws in Japan, which allowed forced sterilizations of people with disabilities, serve as a warning to scrutinize prenatal testing technology that facilitates the “sorting of lives” based on chromosomal abnormalities. Court orders Japanese government to pay damages over forced sterilizations Justin McCurry, The Guardian | 07.03.2024 Japan’s supreme court has ordered the government to pay damages to dozens of people who were forcibly sterilized under a now-defunct eugenics law that allowed sterilization of people with disabilities and illnesses until 1996. From Silent Atrocities to Justice: Examining the Legal Landscape of Forced Sterilisation of Women with Disabilities Across Europe Shivam Jadaun and Shivani, JURISTNews | 06.27.2024 A study conducted by the European Disability Forum revealed that at least 14 EU nations continue to forcibly sterilize people with disabilities, violating their fundamental rights and human dignity––and international agreements.   ASSISTED REPRODUCTION The fertility industry: profiting from vulnerability Editorial Staff, The Lancet | 07.20.2024 In most countries, infertility treatments are offered by profit-motivated private clinics, which push costly, unproven add-on treatments and prey on the vulnerabilities of people who hope to have children. Striking costs of infertility point to importance of IVF access and affordability Beth Duff-Brown, Stanford Institute for Economic Policy Research | 07.12.2024 New research links infertility to poorer mental health outcomes and underscores that policies related to IVF affordability affect its use, “especially at the lower end of the income spectrum.” Most support protecting access to IVF Staff, AP-NORC | 07.12.2024 A survey conducted in June 2024 found that about 6 in 10 adults favor protecting access to IVF, including 77% of Democrats and 56% of Republicans. The public is more divided about the fate of unused embryos produced during IVF. Netflix’s ‘Man With 1000 Kids’ puts a spotlight on the lack of international regulations for sperm donors Elizabeth Chuck, NBC News | 07.09.2024 A Netflix docuseries about a serial sperm donor examines the unregulated world of sperm donation. There are no stopgap measures to prevent donors who have been banned by one country from simply going elsewhere to donate more. RNC approves platform that would give rights to fetuses, endangering abortion, IVF Amanda Becker and Shefali Luthra, The 19th | 07.08.2024 The Republican Party’s adopted platform supports states establishing fetal personhood laws that would effectively ban abortion at all stages of pregnancy and could create barriers to IVF procedures. Surrogacy money scandal leaves parents-to-be in limbo nightmare Gilma Avalos, NBC New York | 07.03.2024 An escrow account management company that serves as an intermediary in surrogacy arrangements has been accused of looting millions of dollars from over 600 escrow accounts belonging to intended parents. IVF in the USA: A political dance Sonia Suter and Naomi Cahn, PET | 07.01.2024 Republicans’ and Democrats’ disagreements about how to regulate IVF have resulted in a federal stalemate. Returning regulatory questions to states provides only piecemeal protections and threatens to intensify reproductive inequalities.   SURROGACY 360   The murky world of surrogacy in Mexico Staff, Mexico News Daily | 07.18.2024 International agencies promote surrogacy in Mexico, even though there is no federal regulation and only four states have explicit laws on surrogacy. Mexico’s Supreme Court legalized surrogacy in 2021, but lack of adequate regulation leaves open the door to human rights violations, with no legal recourse for the parties involved.     STEM CELLS Promised Cures, Tainted Cells: How Cord Blood Banks Mislead Parents Sarah Kliff and Azeen Ghorayshi, The New York Times | 07.15.2024 Cord blood banks have consistently misled customers and doctors about “lifesaving possibilities.” In fact, umbilical cord blood is no longer a preferred source for stem cells, and samples are often contaminated and unusable. A Retracted Stem Cell Study Reveals Science’s Shortcomings Peter Aldhous, Scientific American | 07.02.2024 The recent retraction of a decades-old, high-profile stem cell research paper shows fundamental problems in the ways that research is conducted, funding is allocated, and research findings are reported to the public. Lung Institute found guilty of selling patients ‘sham’ stem cell treatment for incurable lung disease Katie LaGrone, WPTV | 06.28.2024 Found guilty of engaging in “deceptive or unfair practices” while it offered customers “valueless” stem cell therapy to treat incurable lung disease, the now-defunct Lung Institute in Tampa will refund over 1,000 patients for treatment costs.   VARIOUS Peter Thiel’s doping games and tech’s quest for a superhuman Parmy Olson, Bloomberg Opinion | 07.12.2024 Peter Thiel’s “Enhanced Games” is a “pro-doping Olympics” that allows athletes to use performance-enhancing drugs. Behind it is a broader transhumanist quest that promotes eugenic ideas and threatens to deepen inequality. Elon Musk, father of 12, denies volunteering his own sperm to help seed a colony on Mars Eva Roytburg, Fortune | 07.11.2024 While the idea of engineering new species suited to life on Mars may sound otherworldly and reminiscent of eugenics, it is part of a broader ideology that Musk and some of his Silicon Valley peers subscribe to: pronatalism. Work on synthetic human embryos to get code of practice in UK Ian Sample, The Guardian | 07.04.2024 A new code of practice aims to address the “gray area” of synthetic embryo research by establishing an oversight committee and providing guidelines for use and development of synthetic embryos in the UK. With its ‘Chevron’ ruling, the Supreme Court claims to be smarter than scientific experts Michael Hiltzik, Los Angeles Times | 07.02.2024 The Supreme Court’s discarding of “Chevron deference” means that judges can now substitute their own judgment for the technical and scientific expertise of regulators on a wide range of issues.   If you’ve read this far, you clearly care about the fight to reclaim human biotechnologies for the common good. Thank you!  Will you support CGS by making a donation today? DONATE       SUBSCRIBE | WEBSITE | ABOUT US | CONTACT       DONATE The Center For Genetics and Society | 2900 Lakeshore Avenue | Oakland, CA 94610 US Unsubscribe | Update Profile | Constant Contact Data Notice