The latest from the Center for Genetics and Society ‌ ‌ ‌ August 12, 2021 Summer 2021: Good Reads on Biopolitics It’s August – which means there’s still summertime left to sample some of the many recent books and movies about human genetics and reproduction. This issue features reviews of a dystopian novel by a Nobel-winning author and two very different eugenics-related nonfiction books. We've also put together this handy list of other recent reviews published at Biopolitical Times. Book Review: Klara and the Sun Anna Fang, Biopolitical Times | 08.12.2021 Kazuo Ishiguro's latest dystopian novel depicts a future where harms emanating from artificial intelligence and human genome editing ripple among individuals, families, and communities. As he put it in his 2017 Nobel Prize lecture, "stunning breakthroughs in science, technology and medicine...may also create savage meritocracies that resemble apartheid." Book Review: The legacy of the eugenics movement lives on in Virginia Anne Rumberger, Guest Contributor, Biopolitical Times | 08.10.2021 Pure America explores both the history and the endurance of eugenic beliefs in Virginia, finding its traces in the contemporary physical and psychic landscape of the state, and opening a window into the national obsession with these ideas in the early twentieth century. Book Review: Failing to Face Reality Pete Shanks, Biopolitical Times | 08.04.2021 Charles Murray’s most recent book, incorrectly titled Facing Reality and inaccurately subtitled Two Truths About Race in America, perpetuates the fallacies he has been promoting ever since The Bell Curve was published in 1994. We would do better to look to the numerous anti-eugenic initiatives that are facing reality in order to improve our world. GENE EDITING | REGENERATIVE MEDICINE | ARTIFICIAL INTELLIGENCE | ASSISTED REPRODUCTION | EUGENICS | GOVERNANCE | VARIOUS GENE EDITING ‘Socialized Research’ and ‘Privatized Profits’: California's Gene Therapy Research and Million Dollar Plus Treatments David Jensen, California Stem Cell Report | 08.09.2021 The 60-member Congressional Black Caucus has raised concerns about million-dollar plus price tags for gene therapies. Meanwhile, the California stem cell agency is set to dive more deeply into genetic research and is formally charged with ensuring the accessibility and affordability of any treatments it develops. Its affordability program has yet to get off the ground. The next debate on embryo science Editorial, Nature Biotechnology | 08.02.2021 The International Society for Stem Cell Research has called for broad public dialogue on the ethics of human embryo research beyond 14 days post-fertilization. It is now up to interested parties in national scientific, political, ethics and religious communities to take up the challenge. IPO Raises $304M for Caribou, Developer of Gene-Edited Cell Therapies Alex Philippidis, GEN | 07.26.2021 Co-founded in 2011 by Jennifer Doudna and others, Caribou has one cell therapy in early clinical trials and intends to use part of the IPO proceeds to fund trials of two more CAR-T cell therapies. 21st Century Olympic Doping Robin Donovan, NEO.LIFE | 07.22.2021 Gene editing could be used, for example, to increase production of red blood cells and therefore blood oxygen levels, essentially achieving the same result as injecting the banned substance erythropoietin. But any gene editing raises the possibility of unpredictable (and irreversible) harms to athletes, and it is unlikely to happen soon, if ever. In world’s first genetically engineered marsupials, scientists get a fresh window into human biology Megan Molteni, STAT | 07.21.2021 After decades of frustration, researchers genetically engineered opossums to create litters of albino pups lacking a gene necessary for developing fur and eye pigmentation. They hope this new ability will boost research into treating human skin cancer and neurological ailments. REGENERATIVE MEDICINE She Has Stem Cells in Her Crosshairs Elizabeth Preston, NEO.LIFE | 08.05.2021 Agnieszka Czechowicz has been developing a way of using antibodies to target disease-causing stem cells in a patient’s bone marrow in order to replace them with healthy stem cells. This avoids the use of highly toxic chemotherapy and radiation to prepare patients for bone marrow transplants that would treat diseases such as severe combined immunodeficiency and Fanconi anemia. Inclusivity and diversity: Integrating international perspectives on stem cell challenges and potential Robin Fears et al., Stem Cell Reports | 07.29.2021 An initiative by the InterAcademy Partnership convened stem cell experts worldwide to identify opportunities and challenges. The group addressed a range of issues, including ethical assessment; pre-clinical and clinical research; regulatory authorization and medicines access; and engagement with patients, policy makers, and the public. ARTIFICIAL INTELLIGENCE These Algorithms Look at X-Rays—and Somehow Detect Your Race Tom Simonite, Wired | 08.05.2021 The research demonstrates how crucial it is to check for racial bias in health algorithms. Complicating that task: The algorithms’ creators themselves aren’t sure what cues the algorithms use to predict a person’s race. ASSISTED REPRODUCTION The governor was right to veto a dangerous NC abortion bill Rebecca Todd Peters, The Charlotte Observer | 08.04.2021 This bill is what is commonly known as a “reason” ban. It seeks to eliminate so-called “eugenic abortions” based on sex, race, or “presence or presumed presence of Down syndrome.” Proponents are exploiting the legacy of eugenics to stigmatize women who have abortions and bully opponents into supporting the bill. Countries with a cultural preference for sons likely to lose another 4.7 million girls by 2030 Emily Henderson, News Medical | 07.31.2021 Research published in BMJ Global Health projected the sex ratio at birth for all countries from 2021 to 2100. The full social and economic impacts of the predicted surplus of young men are as yet unknown. Universities should not offer the false hope of ‘fertility’ benefits Pamela Mahoney Tsigdinos, Times Higher Education | 07.29.2021 More and more women are delaying childbirth, wooed by the belief that science will come to their aid. And employers are only encouraging the trend. Institutions that want to help their staff have children should focus on the factors that drive postponement, implement structural workplace changes, and offer more help with childcare. EUGENICS How ‘race-norming’ was built into the NFL concussion settlement Will Hobson, The Washington Post | 08.02.2021 The NFL and lawyers for former players blame the controversial practice on doctors. But both sides negotiated a settlement that guaranteed race would affect payouts — and defended the practice long after concerns were raised. The nature (and nurture) of IQ Meredith Wadman, Science | 07.30.2021 The Orphans of Davenport chronicles a major 20th century intellectual battle over IQ. The 1930s eugenicist establishment was convinced that intelligence was a fixed and heritable trait, but Harold Skeels and his Iowa colleagues demonstrated that children's IQ scores changed with time and circumstance. Czech Republic: Hard won justice for women survivors of unlawful sterilization Stefan Simanowitz, Amnesty International | 07.22.2021 The Czech Senate has finally voted to compensate thousands of Roma women who were unlawfully sterilized between 1966 and 2012. This follows a long campaign for justice by survivors, who will be eligible for compensation of 300,000 CZK (about $14,000). GOVERNANCE USDA’s actions on gene-edited approvals challenged in court Jacqui Fatka, Farm Progress | 08.06.2021 Environmental organizations are seeking to overturn rules issued by the previous administration that eliminate some regulatory requirements for gene-edited crops, trees, and grasses, and delegate some of USDA’s responsibilities to industry. The lawsuit has been filed by the Center for Food Safety; other plaintiffs are National Family Farm Coalition, Pesticide Action Network North America, Center for Environmental Health, Friends of the Earth, and Center for Biological Diversity. ACMG Carrier Screening Guidelines: Falling Short On Equity and Inclusion Katie Stoll and Robert Resta, The DNA Exchange | 07.26.2021 The American College of Medical Genetics and Genomics recently published new guidelines on screening for carriers of genetic conditions. They fall short in several areas, including criteria for determining the severity of the included conditions, a limited definition of inclusivity, and what choices patients should have. It is especially important to include diverse stakeholder voices in these discussions. For Good Science, You Need Engaged Citizens Gregory E. Kaebnick and Michael K. Gusmano, Scientific American | 07.22.2021 Public deliberation could be tailored to the many issues that tend to elude the voting/governing feedback loop. Gene editing is a prime example. In the end, good science depends on democracy, and democracy depends on a deeper, richer engagement between citizens and governance structures. VARIOUS Giraffes May Be as Socially Complex as Chimps and Elephants Cara Giaimo, The New York Times | 08.07.2021 A review of earlier research shows that giraffes are not loners, but socially complex creatures, akin to elephants or chimpanzees. Giraffe society seems to be built around strong pair bonds and kinship groups. Giraffe females tend to live long past their childbearing years and may help with the young. Family of Henrietta Lacks hires star civil rights attorney Ben Crump, who says they plan to sue pharmaceutical companies Tim Prudente, The Baltimore Sun | 07.29.2021 An attorney for the Lacks family said a legal team is investigating lawsuits against as many as 100 defendants, mostly pharmaceutical companies. They haven’t ruled out a case against the Johns Hopkins Hospital, where the “HeLa” cells were first isolated and cultivated. Philippines approves GMO golden rice for commercial production Staff, GMWatch | 07.23.2021 No independent data on the safety of this GMO for health and the environment have been published; numerous native plants contain high levels of beta-carotene, which the rice is engineered to contain; and even the FDA says that GMO golden rice doesn't contain enough beta-carotene to justify a health claim. 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