The latest from the Center for Genetics and Society ‌ ‌ ‌ June 8, 2021 Heritable Human Genome Editing: Who Decides Who Decides? Pete Shanks, Biopolitical Times | 06.07.2021 The reports and convenings that together make up the “official discussion” of heritable genome editing have been organized by a remarkably small and overlapping group of people. It would be unfortunate to misconstrue this lack of diversity as consensus. Welcome, Connor! Connor McAlister is CGS’ new summer intern through the Reproductive Rights Activist Service Corps program. Connor is interested in increasing awareness of how human biotechnologies impact marginalized communities, especially those with disabilities. They are currently studying the Philosophy of Science and Medicine at the University of Tennessee. Through their work at CGS, they hope to further their understanding of reproductive justice, and as a result, be better able to educate the world around them. CRISPR People: The Science and Ethics of Editing Humans by Henry T. Greely Gina Maranto, Biopolitical Times | 06.04.2021 CRISPR People is a historical reconstruction, a legal inquiry, and an ethical examination of He Jiankui’s clinical experiment, in which women were implanted with embryos that had been genetically altered using CRISPR. Barring further disclosures from inside China, Greely’s account of events is likely to remain as definitive as we get. HERITABLE HUMAN GENOME EDITING | EMBRYO RESEARCH | GENOMICS | GENE THERAPY | GENETIC PRIVACY | ASSISTED REPRODUCTION | VARIOUS HERITABLE HUMAN GENOME EDITING Genome editing technologies: some clarifications but no revision of the Oviedo Convention Council of Europe, Press Statement | 06.04.2021 The Council of Europe Committee on Bioethics recently examined Article 13 of the Oviedo Convention, the only international legally binding instrument addressing human rights in the biomedical field, in light of developments in human genome editing. After taking into account the technical, scientific, and ethical aspects of these developments, the committee concluded that the conditions were not met for a modification of the provisions of Article 13, which currently prohibits heritable human genome editing. Preparing For The Next Generation of Ethical Challenges Concerning Heritable Human Genome Editing Robert Klitzman, Bioethics.net | 06.02.2021 The report of the International Commission on the Clinical Use of Human Germline Genome Editing, published in 2020, carefully considered a range of key issues and provided valuable insights and guidelines, but also underscored critical remaining challenges. These unresolved quandaries concern neither science alone nor processes of governance alone, but rather require intricate balancing of competing ethical principles. EMBRYO RESEARCH Human Embryo Research Beyond 14 Days? International Perspectives Sheetal Soni and Françoise Baylis, Hastings Center Bioethics Forum | 06.07.2021 Revised research guidelines on culturing in vitro human embryos beyond 14 days provide little guidance and considerable irony. The 2021 guidelines promote public engagement, and yet the decision to discard the 14-day rule – an international standard – was made without public input. GENOMICS A complete human genome sequence is close: how scientists filled in the gaps Sara Reardon, Nature | 06.04.2021 Researchers added 200 million DNA base pairs and 115 protein-coding genes to the reference genome — but they’ve yet to entirely sequence the Y chromosome. Researchers claim they have sequenced the entirety of the human genome — including the missing parts Matthew Herper, STAT | 06.01.2021 The results increased the number of DNA bases from 2.92 billion to 3.05 billion, a 4.5% increase. But the count of protein-coding genes increased by just 0.4%, to 19,969. As with the 2003 draft, the sequence contains only 23 chromosomes, instead of two differing sets of chromosomes, as normal human cells do; the diploid genome sequence will follow. GENE THERAPY Newer methods may boost gene therapy’s use for more diseases Marilynn Marchione, AP | 06.02.2021 Seven gene therapies are approved in the United States and a few more elsewhere. 1,085 companies were developing them by the end of 2020, and more than 400 gene therapy trials are underway. What has scientists excited is better vectors — disabled viruses that ferry the gene into cells — that seem safer and more effective, though some experts remain cautious. GENETIC PRIVACY Two New Laws Restrict Police Use of DNA Search Method Virginia Hughes, The New York Times | 05.31.2021 Maryland and Montana have passed the nation’s first laws limiting forensic genealogy, the method that found the Golden State Killer. Maryland’s requires a judge’s signoff; limits use to serious crimes, such as murder and sexual assault; and requires that the databases have strict policies around user consent. Montana’s is narrower but requires a search warrant. ASSISTED REPRODUCTION A startup says it helps parents pick healthier embryos. Experts say it’s not that simple Melody Petersen, Los Angeles Times | 05.26.2021 Orchid Inc. says its tests for schizophrenia, Alzheimer’s, cancer, and seven other diseases ensure peace of mind. Scientists say it isn’t that simple, technically or ethically. Observers have also raised questions about another company called Genomic Prediction, which offers to assess and select embryos. One news report referred to its test as “straight out of a dystopian sci-fi film.” VARIOUS The hunt for the master cow that will feed the world Matt Reynolds, Wired UK | 05.25.2021 The cellular blueprint for tomorrow’s factory-brewed burgers is out there somewhere – but, without access to cell lines, many of the people trying to make this future a reality are still fumbling around. It takes a significant amount of resources and time to acquire and characterize a viable cell line in-house. 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