The latest from the Center for Genetics and Society     DONATE September 26, 2024         Human Biotech is in the News: We Need to Talk Pete Shanks, Biopolitical Times | 09.25.2024 In the current presidential campaign, the battle over abortion has swelled and morphed to encompass IVF. Meanwhile, rapidly evolving discussions are tackling some of the more complicated facets of new reproductive technologies and those yet to come.        Two new “Legacies of Eugenics” essays published In the past month, two new essays have been published at Los Angeles Review of Books in the "Legacies of Eugenics" Series. In Breeding for IQ, Emily Merchant argues that eugenics does not work by breeding smarter humans, but rather by naturalizing inequality. In The DNA Dreams of the New Eugenics, Patricia Williams examines the overtly eugenic notions of human value at play in some genetics and gene editing research. Find the full series on the LARB website.   Online event: Are sperm donors really so different from other volunteers? Journalist Alison Motluk will talk with three men about what it is like to donate, why they decided to do it, how their family and friends reacted, and what they want you to know about donors. Register here for the October 4 (9am PT) event and check out the full slate for the Politics of Reproduction Speaker Series. Welcome, CGS interns! Two fantastic undergraduate interns from the Health Sciences Internship program at UC Berkeley have joined CGS for fall semester: Maddie Grieb, a Psychology major, and Charisse Chih, a Molecular and Cell Biology major and Global Public Health and Data Science minor. Learn more about Maddie and Charisse, and what they hope to learn in their time at CGS.       Update on Polling about Human Biotechnologies Pete Shanks, Biopolitical Times | 08.26.2024 The latest update to CGS’ compilation of polls on biotechnologies includes new academic surveys that assess public views of heritable genome editing and polygenic risk scores for embryo selection.           Podcast interview with Emily Galpern CGS consultant Emily Galpern was interviewed by Isabelle Bartram on the Gen-ethische Netzwerk (GeN) podcast Hingehört & Nachgefragt. In the episode "Menschen vor Profite!" ("People before Profit!"), Emily and Isabelle discuss the groundbreaking social justice principles on heritable genome editing produced by CGS' Gender Justice and Disability Rights Coalition. Listen to the interview (in English - after a short introduction in German) on Spotify and check out the whole podcast series on the GeN website. Podcast interview on the “Legacies of Eugenics” project UC Berkeley professor of law and bioethics and CGS Senior Fellow Osagie K. Obasogie discusses the “Legacies of Eugenics” essay series in the LA Review of Books.   GENE THERAPY | GENE EDITING | EUGENICS | TECHNO-EUGENICS ASSISTED REPRODUCTION | SURROGACY360 | VARIOUS   GENE THERAPY What’s the Meaning of ‘Cure’ in Gene Therapy? Don Sapatkin, Managed Healthcare Executive | 09.20.2024 The contested concept of “cure” is frequently invoked in discussion of gene therapies. New research examines different definitions of the term and challenges its use in clinical conversations on gene therapy. Doctors cured her sickle-cell disease. So why is she still in pain? Heidi Ledford, Nature | 09.17.2024 Patients whose sickle cell disease has been “cured” by stem cell transplants or gene therapy can experience lingering effects, including chronic pain, which are then dismissed in clinical settings. First Day of a ‘New Life’ for a Boy With Sickle Cell Gina Kolata, The New York Times | 09.16.2024 Hospital capacity and negotiations with insurance companies are slowing the rollout of FDA-approved gene therapies for sickle cell disease. Sickle cell disease in India: The quest for a cure Priyanka Runwal, Chemical and Engineering News | 08.05.2024 Recently approved gene therapies for sickle cell disease prove promising as a new treatment, but their price tags mean they are out of reach in lower- and middle-income countries including India, where the disease is prevalent.   GENE EDITING What are the lines and who draws them?: The CRISPR-Cas9 story Sara Moretto, Varsity | 09.22.2024 While discussions of heritable genome editing often focus on the science, it has just as much to do with societal attitudes toward illness and disability. Attempts to edit the human genome, which risk off-target effects and serious complications, are often driven by a preoccupation with achieving “normalcy.” Beyond gene-edited babies: the possible paths for tinkering with human evolution Antonio Regalado, MIT Technology Review | 08.22.2024 Editing human embryos is restricted or banned in much of the world. Some researchers want to use CRISPR to genetically “enhance” children and adults instead––the effects of which may not be known for decades to come. Editing fetal genomes is on the horizon − a medical anthropologist explains why ethical discussions with the target communities should happen sooner rather than later Julia Brown, The Conversation | 08.16.2024 Some scientists hope to make prenatal genome editing possible, but they are rarely trained to think through the technique’s social implications. Communal deliberation and input from the public are needed. China’s ethics guidelines – A new era for human genome editing? Joy Zhang, PET | 08.12.2024 Could the guidelines’ silence on how 'good' should be defined––and by whom––potentially leave an opening for further unethical clinical applications with 'good' intentions? The Power and Potential of Gene Tuning Fyodor Urnov, Time | 08.12.2024 Research suggests that disease develops from discordant gene expression. “Gene tuning” treatments would draw on epigenetics to change how and when genes are expressed.   EUGENICS Live Free or DEI Gaby Del Valle, The Baffler | 09.18.2024 The Right’s recent embrace of hereditarianism and natalism suggests that eugenic thinking is once again ascendant beyond the fringes. Gov’t, forced sterilization victims reach compensation settlement Kyodo News | 09.13.2024 The Japanese government will pay 15 million yen ($106,000) in compensation to each person who was forced to undergo sterilization from the 1950s to the 1970s under a now-defunct eugenics law. Doctors use problematic race-based algorithms to guide care every day. Why are they so hard to change? Katie Palmer and Usha Lee McFarling, Stat | 09.03.2024 Race-based medical algorithms are still widely used on millions of patients a year. Growing numbers of clinicians and researchers are recognizing that this can function as a form of medical racism, but changing clinical practices is challenging. ‘Racialized Myths,’ Medical Exploitation, and Dire Results Kylie Marsh and Herbert L. White, The Charlotte Post | 08.31.2024 False, racialized myths about Black women’s bodies have long been used to support their mistreatment, from gynecological experimentation in the 19th century to eugenics in the 20th century. The legacies of these entrenched ideas contribute to current racial disparities in maternal and fetal outcomes. The Far Right Is Becoming Obsessed With Race and IQ Ali Breland, The Atlantic | 08.20.2024 Race science has long been quietly popular on the fringes of the far right, but with Elon Musk at the helm of X and Donald Trump running for president once again, peddlers of race science are now openly embraced. Donald Trump Relies on Eugenics Concepts, UT Prof Argues in New Book Neha Kondaveeti, The Austin Chronicle | 08.16.2024 In a new book, an expert on presidential speech-making demonstrates how Donald Trump’s eugenic rhetoric echoes the pernicious ideology embraced by past U.S. leaders. Go West, Weird Man. The oddballs of the MAGA movement have nothing on Silicon Valley transhumanists. Émile P. Torres, Truthdig | 08.08.2024 Trump and Vance do not have a monopoly on “weird” in American life. Silicon Valley’s bizarre techno-utopian movement has embraced and combined several weird ideologies with ties to eugenics, including transhumanism, effective altruism, and longtermism.   TECHNO-EUGENICS Egg donations build dream families, but systemic racism in the industry has hints of eugenics Matthew Rozsa, Salon | 09.15.2024 Diane Tober’s new book Eggonomics finds that “there are clearly eugenic forces underlying how the supply and demand aspect of egg donation operates in the U.S. and globally.” Further, egg retrievals bring overlooked risks for donors. Want a girl with blue eyes? Inside California’s VIP IVF industry Megan Agnew, The Times | 09.15.2024 Fertility clinics in California are providing IVF to parents who want to select the sex and eye color of their future children. Given the lack of regulation of these practices and profit incentives to expand them, bioethicist Art Caplan predicts that “we will eventually go into eugenic use.” ‘Enhancing’ future generations with CRISPR is a road to a ‘new eugenics,’ says ethicist Rosemarie Garland-Thomson Rosemarie Garland-Thomson, Live Science | 08.26.2024 In an excerpt from her chapter in the new edited volume The Promise and Peril of CRISPR, Rosemarie Garland-Thomson discusses the danger of using CRISPR to enact what she calls "velvet eugenics." ‘Who are we to say they shouldn't exist?’: Dr. Neal Baer on the threat of CRISPR-driven eugenics Nicoletta Lanese, Live Science | 08.26.2024 In an interview, Neal Baer discusses the new book he edited, The Promise and Peril of CRISPR. Contributors, including CGS’ Marcy Darnovsky and Katie Hasson, discuss the implications of the technique for society, especially the risks of reinforcing social inequalities.   ASSISTED REPRODUCTION Senate Republicans block IVF bill, as Democrats elevate issue ahead of November election Deirdre Walsh, NPR | 09.17.2024 For the second time, Senate Republicans blocked a bill introduced by Democrats which would provide a nationwide right to IVF treatments. The World Isn’t Ready for What Comes After I.V.F. Ari Schulman, The New York Times | 09.09.2024 While there is wide support for IVF, new techniques like lab-made gametes (“in vitro gametogenesis”), when championed by “Silicon Valley overlords,” may prompt public scrutiny. Yale Settles With Patients Who Sued Over Painful Egg Retrievals Sarah Kliff, The New York Times | 09.09.2024 Dozens of patients filed a lawsuit against Yale after enduring excruciatingly painful egg retrieval procedures because a nurse at its fertility clinic secretly swapped their anesthesia for saline. Now they will receive substantial compensation. Sperm donors are anonymous in Canada. Adult children are finding their roots anyway. Alison Motluk, Broadview | 08.15.2024 Sperm donation in Canada has changed considerably in the past 50 years, but what hasn’t changed––except in Quebec––is the assumption that the practice ought to remain anonymous. Many other countries have done away with donor anonymity. How Christian Conservatives Are Planning for the Next Battle, on I.V.F. Elizabeth Dias, The New York Times | 08.14.2024 A powerful cadre of conservative Christians has been quietly laying the groundwork for their fight to restrict not only access to abortion but also to IVF, despite the technology having bipartisan support.   SURROGACY 360   Surrogacy, a booming business in Georgia La Croix International | 09.10.2024 In part due to the war in Ukraine, demand for surrogacy in nearby Georgia has surged, so much so that there is a shortage of surrogates. In response, clinics have recruited people from Central Asia, whom they pay less for the same services.     VARIOUS Human embryo models are getting more realistic — raising ethical questions Smriti Mallapaty, Nature | 09.11.2024 Dozens of labs around the world are growing models of human embryos to study development, fertility, and therapies, generating ongoing ethical questions about how to regulate synthetic embryo research.   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