From CGS BioPolitical News & Views <[email protected]>
Subject Gene Editing: Promises, Perils, Price Tags
Date April 15, 2021 4:25 PM
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The latest from Center for Genetics and Society ‌ ‌ ‌ April 15, 2021 Review: The Code Breaker: Jennifer Doudna, Gene Editing, and the Future of the Human Race Gina Maranto, Biopolitical Times | 04.05.2021 Writing "with an eye to best sellerdom" and "an unmistakable tendency to glamorize science," Walter Isaacson sees “the promise of CRISPR more clearly than the peril.” TOMORROW: Democratic Imaginations at the Frontiers of Science and Technology Friday April 16, 2-4pm ET CGS executive director Marcy Darnovsky joins presenters Andrew Jewett, Andrew Feenberg, and Jenny Reardon, and moderators Sheila Jasanoff and J. Benjamin Hurlbut of the Global Observatory for Genome Editing, for a panel discussion about democracy, technology, and the human future. Click here to register. Cleveland Jewish Secular Community event Friday April 23, 6:30-8:30pm ET Marcy Darnovsky will discuss why we should “Use Gene Editing to Treat Patients, Not Design Babies.” Click here to register. “Conceive with Confidence”!? Pete Shanks, Biopolitical Times | 04.14.2021 A brand-new, well-financed pre-conception genome analysis company made a splash last week, raising $4.5 million from investors. Orchid is the latest company to offer polygenic embryo screening to prospective parents. But the scientific basis is deeply flawed, the social implications are appalling, and previous attempts to commercialize polygenic genome data have not been successful. She Gave Birth To Her Own Children, Then A Michigan Judge Ruled Her To Be A Surrogate Ellen Trachman, Above the Law | 04.07.2021 Resolving a custody dispute, the Michigan Court of Appeals affirmed that genetics is not the only way to establish a parent-child relationship. The defendant was represented by the National Center for Lesbian Rights. The Center for Genetics and Society joined ACLU, ACLU Michigan, Center for Reproductive Rights, and the Pro-Choice Alliance for Responsible Research in filing an amicus brief in support of reversing the trial court’s strange decision. HERITABLE HUMAN GENOME EDITING | GENE THERAPY | GENE EDITING | ASSISTED REPRODUCTION | EUGENICS | VARIOUS HERITABLE HUMAN GENOME EDITING The genetic mistakes that could shape our species Zaria Gorvett, BBC Future | 04.12.2021 Given how little we know about the functions of certain genes in our current environment, we must be extra cautious when making potentially millennia-straddling changes. To decide if an edit is ethical, we might first need to understand what kind of future world it could linger on in. Researchers call for greater awareness of unintended consequences of CRISPR gene editing Press Release, The Francis Crick Institute | 04.09.2021 A newly published study found that CRISPR-Cas9 genome editing in early human embryos can lead to unintended mutations at the targeted section of DNA. The work highlights the need for further research into the effects of CRISPR-Cas9 genome editing, especially when used to edit human DNA. What Is It to Be Human Anymore? Michael Hirsh, Foreign Policy | 04.02.2021 The Code Breaker proves somewhat disappointing in that Isaacson tends to gloss over the existential hazards of CRISPR that are already emerging. This is not the future of dystopian science fiction where the government takes control. No, what we face is far more challenging. Evil governments like the Nazis can be overthrown; individual human ambition cannot. GENE THERAPY Harbingers of Things to Come in Gene Therapy Josh P. Roberts, GEN | 04.02.2021 This substantial survey article concludes that modest gains will be succeeded by dramatic breakthroughs as technological advances broaden gene therapy’s scope while enhancing safety and reducing costs. FDA approves CRISPR gene therapy trials for sickle cell disease Catherine Hsu, The Daily Californian | 04.01.2021 Fyodor Urnov, director of technology and translation at Innovative Genomics Institute, said that their eventual goal is to make the treatment more accessible by reducing the cost below $100,000. UC launches gene therapy trial to transform the treatment of sickle cell disease Lisa M. Krieger, The Mercury News | 03.31.2021 University of California scientists are launching a first-ever human study of a powerful new gene-editing technique to treat sickle cell disease. They plan to enroll the first six patients this fall; each experimental treatment will cost $500,000-$750,000 per patient. A similar trial is planned at Stanford. GENE EDITING “Small” changes made with gene editing cause severe deformities in plants GM Watch | 04.01.2021 Gene editing in plants causes drastic unwanted effects, a new scientific publication in the journal Environmental Sciences Europe shows — even when the gene editor intends to make small tweaks to existing genes rather than, for example, to introduce new genetic material. ASSISTED REPRODUCTION The Egg Hunt Katherine Plumhoff, Teen Vogue | 04.09.2021 In the United States, we have a tiered commercial market in human eggs, where some people are worth dramatically more than others. “One of the key factors in transforming how egg donation is practiced [in the US] comes down to eliminating student loan debt and revamping the cost of college education,” says Dr. Diane Tober. EUGENICS Ronald Fisher Is Not Being ‘Cancelled’, But His Eugenic Advocacy Should Have Consequences Eric Michael Johnson, This View of Life | 04.12.2021 Following a student petition with 1400 signatures, a commemorative window in Cambridge honoring the statistician, geneticist, and evolutionary biologist Ronald Aylmer Fisher was removed because of his advocacy of eugenics. Fisher’s contributions to both science and the history of racism were substantial. The uncomfortable reality is that statistics and genetics would not be the same today without the significant role that eugenics played in these fields. Troubling podcast puts JAMA, the ‘voice of medicine,’ under fire for its mishandling of race Usha Lee McFarling, STAT | 04.06.2021 Discussions of racism in medicine have taken center stage during the pandemic and as journals and medical associations have publicly affirmed the Black Lives Matter movement and their own commitment to racial equality. But problematic articles have appeared recently and steadily in The Journal of the American Medical Association and other prominent medical journals. Reparations for CA forced sterilization survivors: Support AB 1007 Aminah Elster, The Daily Californian | 04.02.2021 This year, we are hopeful that with increased public awareness and pressure, California will finally be held accountable for this horrific form of racist and gendered state violence. AB 1007 would establish the Forced Sterilization Compensation Program to provide reparations to survivors of forced sterilization under California’s eugenics laws from 1909 to 1979 and to survivors of involuntary sterilizations in women’s state prisons after 1979. Official apology for eugenics program moves ahead in Vermont Legislature Ethan Bakuli, Burlington Free Press | 04.01.2021 A joint resolution “sincerely apologizing and expressing sorrow and regret” to Vermonters impacted and harmed by state-sanctioned eugenics policies and practices was approved unanimously by the House of Representatives. Before final approval and recognition, the bill must be passed by the Senate. VARIOUS Big Tech’s guide to talking about AI ethics Karen Hao, MIT Technology Review | 04.13.2021 Tech giants have developed a new vocabulary to use when they want to assure the public that they care deeply about developing AI responsibly — without inviting too much scrutiny. Here are 50-ish words you can use to show that you care without incriminating yourself. AI companies are enabling genocide in China Michael Chertoff and N. MacDonnell Ulsch, The Washington Post | 04.12.2021 The Chinese Communist Party’s persecution of the Uyghur people will go down in history as one of the worst human rights tragedies of our time — not just for the abject horror of targeting a population of 11 million for genocide, but also for the advanced technologies that enabled it, many developed in the United States, Britain, Norway, France and India. Surviving the Crackdown in Xinjiang Raffi Khatchadourian, The New Yorker | 04.05.2021 Mass detentions and surveillance dominate the lives of China’s Uyghurs and Kazakhs. The brutal reality and its development over the last decade are illustrated by the story of a woman who was detained for twenty months after returning from Canada to settle the affairs of her late father. 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