The latest from the Center for Genetics and Society June 24, 2021 A Growing Chorus of Objections to Loosened Rules for Embryo and Germline Research Pete Shanks, Biopolitical Times | 06.24.2021 Distinguished bioethicists, religious conservatives, and scientific entrepreneurs — including people who rarely agree with each other — all oppose changes to the “14-day rule” in human embryo research and to relaxing prohibitions against human germline editing. California Eugenics Legacies Symposium: Video Available Video recordings of the “California Eugenics Legacies Symposium,” held June 4-5, 2021, are now available. The event brought together a diverse group of scholars, educators, students, activists, and community members to engage in dialogue exploring how California’s institutions of higher learning, health care, and government promoted, sustained, and mainstreamed eugenics. CGS’ Marcy Darnovsky, Osagie Obasogie, and Alexandra Minna Stern presented at the symposium. Expanding Biolab Complex in Berkeley Has Residents Worried Sharon Lerner and Lee Fang, The Intercept | 06.09.2021 The Bayer Corporation has applied to the Berkeley City Council for a 30-year development agreement on its 46-acre campus, but has provided area residents with little clarity about how its research might affect them. “What are they going to do there?” asked CGS’ Marcy Darnovsky. “They say they’re going to follow all the rules. Well, is there any oversight?” HERITABLE HUMAN GENOME EDITING | GENOMICS | DNA DATABASES | ASSISTED REPRODUCTION | STEM CELLS | VARIOUS HERITABLE HUMAN GENOME EDITING ISSCR: grave omission of age limit for embryo research Josephine Johnston, Françoise Baylis & Henry T. Greely, Nature | 06.22.2021 At some point, the developing human embryo reaches a stage at which it should not be used for research. There is disagreement about when that happens, but scientists need to acknowledge that it does, and reassure the public that they accept limits. ISSCR guidelines fudge heritable human-genome editing Françoise Baylis, Nature | 06.15.2021 There are troubling inconsistencies in the revised guidelines for stem-cell research and clinical translation issued in May by the International Society for Stem Cell Research. These imply that, in time, research that involves making heritable changes to the human genome will be permitted, and ignore that 75 countries with policies on such research prohibit it. Clinical trials of germline gene editing: The exploitation problem Erik Malmqvist, Bioethics | 06.14.2021 Clinical trials in which genetically edited embryos would be implanted into a woman’s uterus, gestated, and brought to term would expose people in a vulnerable situation to risks and burdens that are substantial and not obviously offset by benefits. This would be a significant ethical obstacle for clinical use of human germline gene editing. GENOMICS A new age of genetic screening is coming — and we don’t have any rules for it Dalton Conley, Washington Post | 06.14.2021 New ‘polygenic’ screening techniques open a Pandora’s Box of ethical issues. A team of researchers conducted a nationally representative survey of 1,457 Americans to assess public sentiment about the use of polygenic scores in medicine, education, dating, and beyond. The degree of tolerance people showed surprised them. 20 years after the human genome was first sequenced, dangerous gene myths abound Philip Ball, The Guardian | 06.09.2021 A blizzard of misleading rhetoric surrounded the Human Genome Project, contributing to widespread and sometimes dangerous misunderstandings. Life is not a readout of genes – it’s a far more interesting, subtle, and contingent process than that. DNA DATABASES MPs urge Government to review regulations for direct-to-consumer genetic testing UK Government Press Release | 06.22.2021 The UK Parliament’s Science and Technology Committee has published a report on direct-to-consumer genomic testing, which recommends updating regulations to address risks by promoting technical and ethical standards. Forensic database challenged over ethics of DNA holdings Quirin Schiermeier, Nature | 06.15.2021 Geneticists say a global Y-chromosome database holds profiles from men who are unlikely to have given free informed consent. This is the latest strand of a wider campaign to draw attention to a ramping-up of DNA profiling across the world in the absence of stringent ethical oversight. Often, the onus for checking ethical compliance rests only on a scientific journal. Detectives Just Used DNA To Solve A 1956 Double Homicide. They May Have Made History Sharon Pruitt-Young, NPR | 06.12.2021 Two 1956 killings went unsolved until this year, when forensic genetic genealogy led investigators to a suspect who had died in 2007. His family agreed to provide DNA samples, which confirmed the identification. The case is one of the oldest solved using forensic genealogy. While authorities hope to apply this technology to cold cases dating back even further, new state legislation restricting forensic genealogy could complicate matters. ASSISTED REPRODUCTION Jury awards $15 million in landmark case over embryos, eggs destroyed in fertility clinic tank failure Derek Hawkins, The Washington Post | 06.11.2021 Jurors held Chart Industries, which made the storage tanks, 90 percent responsible and Pacific Fertility Center 10 percent responsible for the failure. This historic verdict could have far-reaching consequences for the loosely regulated U.S. fertility industry. Hundreds of other cases are pending, and policymakers may take note and issue tighter regulations. IVF clinics that lie about success rates could face legal action, here's what you need to know Annabelle Spranklen, Glamour | 06.10.2021 Responding to concerns that clinics are misleading patients by inflating success rates and offering unclear pricing, two UK agencies have issued guidance that stresses the legal obligation of clinics to treat all patients fairly and to help them understand their rights. “Emotional choreography” and the cross-border egg trade Alison Motluk, HeyReprotech | 06. 08. 2021 Young women are recruited into the global egg trade through shrewd emotional marketing techniques and a skillful manipulation of their emotions during the process. The result is an addictive formula that combines an appeal to altruism with the lure of money and foreign adventure, while playing down the realities of egg donation. STEM CELLS In world of stem cell research, “UC Caucus” reigns supreme David Jensen, Capitol Weekly | 06.21.2021 The “caucus” is composed of the 13 members of the California stem cell agency’s governing board who have ties to the University of California, which has received more funding from the agency than any other enterprise – more than $1.2 billion. Unproven stem cell interventions: A global public health problem requiring global deliberation Zubin Master, Kirstin R.W. Matthews, and Mohamed Abou-el-Enein, Stem Cell Reports | 06.08.2021 The issue of marketing unproven stem cell interventions spans national borders and requires international cooperation, as no one country can effectively address the issue by itself. The World Health Organization should form a committee to provide guidance on ways to harmonize national regulations, promote regulatory approaches responsive to unmet patient needs, and formulate an educational campaign against misinformation. VARIOUS Ageing process is unstoppable, finds unprecedented study Amelia Hill, The Guardian | 06.17.2021 Research suggests that humans cannot slow the rate at which they get older because of biological constraints. A statistical analysis comparing humans and non-human primates found similar mortality patterns across species. Gains in human life expectancy were explained by reduced mortality at younger ages, not by slowing down death or aging. How scientists are embracing NFTs Nicola Jones, Nature | 06.18.2021 Some advocates say that auctioning non-fungible tokens (NFTs) provides an incentive to showcase science to the public, a new method of fundraising, and even a way for individuals to monetize genomic data. Others see a bubble that’s sure to burst. Are gene-editing technologies traditional? Not if they are linked to intellectual rights Kathleen Garnett, A Bigger Conversation | 06.09.2021 The notion that genetic technologies are merely an extension of “traditional” agricultural breeding — which is essentially the policy of the UK government — is contradicted by the concept that they can be patented. Consumers and farmers have a right to know whether their purchases are novel, untested, artificial, synthetic, and anthropogenic. SUBSCRIBE | WEBSITE | ABOUT US | WHO WE ARE | CONTACT DONATE The Center For Genetics and Society | 2900 Lakeshore Ave., Oakland, CA 94610 Unsubscribe
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