The latest from the Center for Genetics and Society     DONATE August 24, 2023   Reviewing ‘The Retrievals’: The Compounding Pain of Reproductive Injustice Emma McDonald Kennedy, Biopolitical Times | 08.21.2023 Recognizing the need to pay attention to women’s experiences of pain in fertility procedures, The Retrievals urges us to examine and critique underlying cultural and structural issues in the fertility industry that disproportionately impact marginalized populations.         Lab-grown babies on the horizon: how IVG could transform human reproduction Willow Shah-Neville, Labiotech | 08.22.2023 IVG “takes us in the direction of attempts at creating people who are supposedly biologically superior to others and could lead to a new eugenics, in a Gattaca-type world of even more intense inequalities,” said CGS Associate Director Katie Hasson.   “It’s a Way of Reparations”: Why Henrietta Lacks Settlement Matters for Bioethics & Racial Justice Amy Goodman, Democracy Now! | 08.07.2023 “What happened to Henrietta Lacks didn’t just happen to her. It’s part of a long history of experimentation and exploitation of Black people in biomedical research. And that has been grounded on a racist myth of Black biological difference,” said CGS Advisory Board member Dorothy Roberts.   Human embryo replicas have gotten more complex. Here’s what you need to know Tina Hesman Saey, Science News | 07.24.2023 Conversations with the public about whether and how to use embryo models need to start now. “The technical limits of what scientists can currently do with these models should not define the ethical discussion and what the ethical limits should be,” said CGS Associate Director Katie Hasson.   Inside a Ukrainian baby factory Ilya Gridneff, Emily Schultheis and Dmytro Drabyk, Politico | 07.23.2023 CGS Associate Director Katie Hasson emphasized the need for safeguards in the surrogacy industry to protect women’s health and rights, as some medical procedures offered by global surrogacy firms pose significant health risks to surrogates.       Book Review: Mud, Blood, and Ghosts: Populism, Eugenics, and Spiritualism in the American West Gabriela Corona Valencia, Guest Contributor, Biopolitical Times | 08.22.2023 Julia Carr’s meticulous exploration of her family’s complicity with eugenics in the late 19th and early 20th centuries challenges readers to confront the uncomfortable truth that individuals, even those we hold dear, can be both sources of inspiration and instruments of oppression.   Ineffective Altruism, Apocalypse, and Human Genetic Enhancement Pete Shanks, Biopolitical Times | 07.21.2023 Court filings reveal that crypto-currency fraudster Sam Bankman-Fried was planning to build a bunker on a Micronesian island to shelter effective altruists from an apocalyptic event––and to carry out genetic enhancements.   GENE EDITING | EUGENICS | STEM CELLS | GENE THERAPIES | GENOMICS ASSISTED REPRODUCTION | SURROGACY360 | ARTIFICIAL INTELLIGENCE   GENE EDITING From Designer Babies to Devalued Children Elayne Clift, Daily Kos | 08.18.2023 The idea of designer babies and perfect progeny smacks not just of social control but of affluence and exclusion. It illuminates the deep chasm between privilege and poverty, both of which speak to the deprivation of lives that might have been lived. Let’s not forget that eugenics was at the core of slavery and is still a threat in a world of growing fascism. CRISPR causes serious DNA damage with high frequency – but it’s often overlooked Claire Robinson, GMWatch | 08.09.2023 New research suggests that CRISPR-induced double-strand breaks in DNA cause numerous large unintended on-target genetic damages, including deletions, insertions, and chromosomal rearrangements of genetic material. FDA’s Peter Marks says gene editing breakthroughs have met regulatory reality Max Bayer, Fierce Biotech | 07.31.2023 An FDA official acknowledged a “backslide” in gene therapy advancements as researchers’ experimental therapies have hit regulatory snags. Potential therapeutic benefit to patients needs to be balanced with concern for possible off-target effects. Genetic engineering giants: is China poised to lead the way? Willow Shah-Neville, Labiotech | 07.19.2023 China is currently using the gene-editing tool CRISPR for a wide range of applications in agriculture, animals, and medicine, but its regulations for gene editing require further developments to align with international standards.   EUGENICS Inside the Smithsonian’s “Racial Brain Collection” & the Eugenics Project Behind It Amy Goodman, Democracy Now! | 08.18.2023 Washington Post reporters Nicole Dungca and Claire Healy explain their investigation of the Smithsonian’s “racial brain” collection, which was largely put together with stolen specimens from people of color in the first half of the 20th century at the behest of Ales Hrdlicka, a racist anthropologist who was trying to scientifically prove the superiority of white people. Why An Unremarkable Racist Enjoys the Backing of Billionaires Jamelle Bouie, The New York Times | 08.12.2023 Why does an otherwise obscure racist have the ear and support of many powerful people in Silicon Valley? Because his interest in a hierarchical society built on racism serves their interest in a hierarchical society built on class—and ruled by capital. The Ones We Sent Away Jennifer Senior, The Atlantic | 08.07.2023 The U.S. has a long history of mistreating people with disabilities. The eugenics movement led to “undesirables” and “defectives” not only being institutionalized, but also being involuntary subjects of medical experiments and forced sterilization. Compensation for forced sterilizations in California ends soon. Here’s how to apply Emma Fox, Los Angeles Times | 08.04.2023 California’s Forced or Involuntary Sterilization Compensation Program expires at the end of 2023, but many who are eligible for compensation remain unaware of the program or can't easily apply for or receive compensation due to strict eligibility requirements.   STEM CELLS New definition of a human embryo proposed amid rapid scientific advances Megan Molteni, STAT | 08.17.2023 Advances in “stembryology” have led some researchers to propose a new definition of an embryo, but redefining the embryo is not enough: substantive public consultation is needed to develop policies that set limits on embryo research. After 25 years of hype, embryonic stem cells are still waiting for their moment Antonio Regalado, MIT Technology Review | 08.09.2023 Twenty years ago, unrealistic promises of stem cell cures made breakthroughs seem closer than they were. None has reached the market yet. Today, stem cell researchers say new clinical trials are a sign the field may be close to a turning point. Synthetic human embryos could allow for research beyond the 14-day limit, but this raises ethical questions Françoise Baylis and Jocelyn Downie, The Conversation | 07.25.2023 Because the 14-day limit on human embryo research in the U.K. does not apply to lab-created embryos, synthetic embryo research can proceed past 14 days, leaving the door to touted potential benefits–and ethical controversies–wide open. Different laws in Canada mean that synthetic human embryo research will remain limited there for the foreseeable future.   GENE THERAPIES Insight: What happens when a $2 million gene therapy is not enough Deena Beasley, Reuters | 08.16.2023 When gene therapies like Zolgensma fall short of curing a genetic disease, it becomes harder to justify the sky-high prices that researchers have argued are already poor value. Gene Therapies For Eternal Youth Stav Dimitropoulos, proto.life | 08.03.2023 Longevity startups are trying to develop gene therapy technologies to help people remain young, but critics worry that efforts to create a “techno-utopia” with costly, experimental therapies will introduce new problems and exacerbate existing inequalities. The Gene Therapy ‘Quagmire:’ Multimillion- Dollar Costs and Untreated Patients with Rare Diseases David Jensen, The California Stem Cell Report | 08.01.2023 Issues of affordability and accessibility delay evidence-based gene therapies from reaching those who might benefit from them. California’s stem cell and gene therapy agency is launching initiatives to try to help find or finance solutions.   GENOMICS China’s sitting on a goldmine of genetic data – and it doesn’t want to share Jessie Yeung, CNN | 08.12.2023 The Chinese government is further expanding its genomic holdings with a “national genetic survey” that collects genetic information about its population, but it is wary of sharing data with international collaborators. Henrietta Lacks’s family sues another pharmaceutical company Clarence Williams, The Washington Post | 08.10.2023 Having settled a claim against one biotech company, the heirs of Henrietta Lacks have filed a lawsuit against another pharmaceutical company that profited from using cells without her consent.   ASSISTED REPRODUCTION Bartering Your Eggs: A Rotten Deal Arthur Caplan and Gwendolyn P. Quinn, Hastings Bioethics Forum | 08.17.2023 Clinics are offering free egg freezing to patients willing to give half their eggs to for-profit egg banks. The egg banks’ huge profits create tremendous conflicts of interest. The programs may also reinforce bigotry and exacerbate health and social disparities. Spain is the egg donation capital of Europe – here’s what it’s like to be a donor Anna Molas, The Conversation | 08.17.2023 While fertility clinics describe egg retrieval as “fast and easy,” the procedure can carry complications and its long-term risks remain unknown. As demand for eggs increases, including in Spain, urgent action is needed to inform and protect donors. VA insurance won’t cover IVF for LGBTQ+ and unmarried veterans Shefali Luthra, The 19th | 08.14.2023 A lawsuit filed in federal court would push the U.S. Department of Veterans Affairs to cover IVF for veterans who are single or in LGBTQ+ relationships. Italian parliament approves bill to criminalise surrogacy abroad Angela Giuffrida, The Guardian | 07.26.2023 Continuing its efforts to curtail the rights of LGBTQ+ families, the Italian parliament has approved a bill that would make it a crime to travel abroad to have children via surrogacy.   SURROGACY 360   Hannah McCarthy travels to Kenya and finds a growing number of surrogate cases there Hannah McCarthy, The Journal | 08.07.2023 Some Irish parents pursue surrogacy arrangements in Kenya because it is more affordable there, but the global inequalities that lower its cost also make the country less capable of supporting the health of surrogates and preventing their exploitation.   ARTIFICIAL INTELLIGENCE AI Causes Real Harm. Let’s Focus on That over the End-of-Humanity Hype Emily M. Bender and Alex Hanna, Scientific American | 08.12.2023 Effective regulation of AI needs to be grounded in science that investigates real harms, including racial discrimination built into algorithms and wrongful arrests, instead of focusing on hypothetical existential risks. Eight Months Pregnant and Arrested After False Facial Recognition Match Kashmir Hill, The New York Times | 08.06.2023 Relying on faulty results from automated facial recognition technology, which has a history of inaccurately identifying Black offenders, Detroit police falsely accused, detained, and charged a Black woman who was 8 months pregnant with robbery and carjacking.   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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