Email from The Center For Genetics and Society The latest from the Center for Genetics and Society     DONATE February 27, 2025     Who Shall and Shall Not Have a Place in the World? Lily Hu, Los Angeles Review of Books | 02.13.2025 The seventh essay in the CGS-supported Legacies of Eugenics series explains how statistical research on race in the early eugenics movement and today is not “purely scientific curiosity” but is instead motivated by racial ideologies.     Our Bodies, Our Selves Starts a New Chapter Bringing together its educational mission with its longstanding feminist activism, OBOS is now making Suffolk University Center for Women’s Health and Human Rights its global hub for its work on reproductive, health, and sexual justice. Welcome, Lavanya! A fantastic undergraduate intern from the Health Sciences Internship program at UC Berkeley has joined CGS for spring semester. Lavanya Girish is a sophomore pursuing a degree in Microbial Biology and minoring in Data Science. Through CGS, she hopes to explore emerging data-driven technologies and their ethical implications in human biology and medicine. Learn more about Lavanya on the CGS website.     Donald Trump, IVF and Billionaires’ Babies Pete Shanks, Biopolitical Times | 02.27.2025 Trump's recent executive order doesn't actually expand IVF access. Trump-linked pronatalist techno-elites who are advancing eugenics under the guise of technological betterment are more likely to exacerbate inequalities in assisted reproduction. Gene therapy ups and downs Katie Hasson, Biopolitical Times | 02.26.2025 Recent media coverage of gene therapies reveals the disconnects between the promise of revolutionary treatments, the real difference gene therapies have made in the lives of some patients, and the lack of a clear path to profitability in investors’ eyes.       Should We Use Gene Editing to Create Super Babies? Katie Hasson, The New York Times Upfront | 02.17.2025 Responding “No,” is CGS’ Katie Hasson, who argues, “Heritable genome editing, which would change the traits of future children and generations, is unsafe and unnecessary, and it could vastly increase already dire levels of inequality.”   The couple who want to make America procreate again Anna Branigin, The Washington Post | 02.04.2025 Pronatalists may present genetic testing and embryo selection for the “best baby” as a “personal choice,” but as CGS’ Marcy Darnovsky points out, what they're doing is "a form of high-tech, market-based eugenics.”     GENE EDITING | ASILOMAR AT 50 | EUGENICS ASSISTED REPRODUCTION | SURROGACY360 | VARIOUS   GENE EDITING Designing Babies The Economist | 02.24.2025 The return of He Jiankui to the lab suggests that the scientific establishment’s condemnation of heritable genome editing was not as powerful as it first appeared. Despite its dangers, the technique still attracts interest, especially among the super wealthy. Once high-flying Bluebird Bio sells itself to private equity after tough times for the gene therapy maker Angelica Peebles, CNBC | 02.21.2025 Like other biotech companies, Bluebird Bio’s successful gene therapies for rare diseases haven’t resolved its financial challenges. The company announced that it is selling itself to two private equity firms. Rare genetic disorder treated in womb for the first time Smriti Mallapaty, Nature | 02.20.2025 A two-and-a-half-year-old girl shows no signs of spinal muscular atrophy, a rare genetic disorder, after becoming the first person to be treated for the motor-neuron condition while in the womb. Will CRISPR matter? Ryan Cross, Endpoints | 02.19.2025 The hype around CRISPR attracted billions of dollars of investment and resulted in dozens of startup launches. A decade in, initial investor excitement has faded, leaving CRISPR companies struggling. Some are pivoting away from developing therapies for rare disease to treat more common liver and cardiovascular conditions. The second revolution in gene therapy that has cured Javier, a child with a lethal error in the X chromosome Oriol Güell, El País | 02.17.2025 Biotech companies skeptical of the commercial potential of some gene therapies for rare diseases have abandoned their development. An Italian non-profit is seeking regulatory approval for one such therapy, which cured a boy of Wiskott-Aldrich syndrome. What a $2 Million Per Dose Gene Therapy Reveals About Drug Pricing Robin Fields, ProPublica | 02.12.2025 Taxpayers and private charities subsidized much of the science that yielded Zolgensma, but once the therapy had potential, biotech startups rushed in to capitalize. The $2M cost per dose has priced out many families who supported its early development.   ASILOMAR AT 50 Civil society groups warn new Asilomar conference: Scientists must not be allowed to self-regulate GMWatch | 02.24.2025 In an open statement, civil society groups, scientists, and academics are challenging the democratic legitimacy of any conclusions or policy proposals that may arise from the 2025 Spirit of Asilomar and the Future of Biotechnology conference. Money and murder: the dark side of the Asilomar meeting on recombinant DNA Matthew Cobb, Nature | 02.17.2025 If there is one lesson from Asilomar, it is that scientists, policymakers and the global public need to be aware of the potential dangers posed by scientific knowledge. We must do better in recognizing and regulating the implications of new discoveries. Asilomar Déjà Vu? Tina A. Stevens and Stuart Newman, A Bigger Conversation | 02.06.2025 The Spirit of Asilomar meetings mark the 50th anniversary of the 1975 conference. Will they take on the broader ethical issues the original conference failed to consider? Or will they continue to promote the conclusion that scientists can regulate their own research? Taking responsibility: Asilomar and its legacy J. Benjamin Hurlbut, Science | 01.30.2025 50 years later, the legacy of the Asilomar meeting is a “science-first, ethics-later paradigm” that substitutes scientific self-regulation for democratic governance.   EUGENICS As Japan starts compensation payments, forced sterilisation continues around the world Ewan Bolton, The Telegraph | 02.18.2025 “Forced sterilization” brings to mind Nazi Germany and the devastating eugenic policies pursued by fascist regimes in the 1930s-40s, but the practice of sterilizing people considered “genetically inferior” has continued in over 35 countries since the year 2000. Donald Trump’s Next Diversity Target: People With Disabilities Sam Gustin, The Nation | 02.18.2025 Trump’s contempt for people with disabilities and repeated claims about genetics echo the biases of the early 20th-century eugenics movement. Several of his policy proposals, including his threats to slash Medicaid, harm people with disabilities and advance eugenic goals. Scottish authorities ‘colluded with Nazi eugenicist’ to profile Gypsies Mark McLaughlin, The Times | 02.17.2025 Scottish authorities collaborated with a Nazi eugenicist to racially profile Gypsies and Travellers as part of a campaign of “cultural genocide” that continues to this day, according to a leaked report commissioned by the Scottish government. Trump State Department official has repeatedly called for mass sterilization of ‘low-IQ trash’ Gustaf Kilander, The Independent | 02.11.2025 A Trump State Department official has, on a number of occasions, called for the sterilization of “low-IQ trash,” a new report has revealed. America’s Darkest Comeback Tour: From Racehorse Theory to Resistance Emese Ilyés, Common Dreams | 01.23.2025 The alliance between Trump and Elon Musk has only intensified the resurgence of eugenics. The same pseudo-scientific racism that once justified sterilization programs and immigration quotas now powers algorithms and influences policy.   ASSISTED REPRODUCTION Trump’s IVF order: a PR move that gives pronatalists cause for cheer Carter Sherman, The Guardian | 02.19.2025 Although the White House promoted Trump’s executive order on IVF as a way to expand access to the technique, it was widely critiqued as a “PR move” because the order only solicits recommendations––it does not change any policies on IVF. Trapped in the Surrogacy Boom: Thai Women Rescued from Human Egg Farms in Georgia Blene Woldeselasse, Human Rights Research Center | 02.18.2025 Transnational surrogacy carries significant ethical and human rights concerns, as the recent case of human trafficking of Thai women in Georgia shows. Power imbalances between wealthy prospective parents in the global North and surrogates in developing nations increase risks of exploitation. Easing restrictions: Swiss Federal Council announces a comprehensive reform of the Reproductive Medicine Act Alice Margaria and Florina Markwalder, PET | 02.10.2025 Switzerland plans to reform its Reproductive Medicine Act to allow egg donation and to expand access to gamete donation to unmarried couples as well as married couples. The Act will keep bans on embryo donation and surrogacy in place. Egg Donation: A Victory for Reproductive Justice or Another Handmaid’s Tale? Chantal Bittner, Bill of Health | 02.04.2025 Egg donation operates in an unregulated market in the United States, which departs from the EU’s regulatory approach. Despite these differences, donors in both contexts appear motivated by financial compensation and face health risks that are often underemphasized. Technology for lab-grown eggs or sperm on brink of viability, UK fertility watchdog finds Hannah Devlin, The Guardian | 01.26.2025 The Chief Executive of the HFEA, the UK fertility regulator, suggested that advances in in vitro gametogenesis––lab-grown eggs and sperm––make the technique more viable, which will require eventual “statutory regulation.”   SURROGACY 360   Accusations Of Egg-Harvesting Rock Georgian Surrogacy Industry Nino Tarkhnishvili, Radio Free Europe | 02.13.2025 Thai authorities are investigating claims from three Thai women, who say they traveled to Georgia under the pretense of surrogacy only to be forced into a Chinese crime syndicate’s “egg harvesting” operation. The Chinese company says they facilitate surrogacy arrangements with contracts and are not holding surrogates in Georgia against their will.   VARIOUS CA scientists could lose big with Trump medical research cuts David Jensen, Capitol Weekly | 02.19.2025 Drastic cuts by the Trump administration have hit California’s research universities. With NIH funding uncertain as lawsuits responding to the cuts traverse the court system, state-funded CIRM may step in to support biomedical research in the state. The Erasing of American Science Katherine J. Wu, The Atlantic | 02.14.2025 Trump’s cutting of NIH and NSF funding, dismantling of USAID and the clinical trials it conducts abroad, and firing of HHS workers has begun what will likely be a prolonged battle between government and science over how research can and will be done in the US. AI biotechs launch bioprospecting expeditions with Indigenous groups, agree to share benefits Ben Johnson, Nature | 02.14.2025 AI models are generating a renaissance in “bioprospecting.” Some biotech companies are making benefit-sharing agreements with national governments so they can gather genetic data from remote locales and discover proteins with commercial potential. CDC orders pullback of new scientific papers involving its researchers, source says Julie Steenhuysen and Nancy Lapid, Reuters | 02.03.2025 To comply with one of Trump's executive orders, the CDC has told its researchers to withdraw papers being considered for publication in scientific journals. The papers will be reviewed to remove words including gender, transgender, nonbinary, and LGBT.   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? 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