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Book Talk: The Occasional Human Sacrifice
Please join us to hear Dr. Carl Elliott talk about his important new book, The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No. He will discuss shocking cases of abusive medical research, with many disabled and BIPOC at the center, and the struggle whistleblowers face — not the kind most people imagine. This Longmore Institute on Disability event is co-presented with the Center for Genetics and Society. Milton Reynolds will moderate the discussion. In person or online, May 28 at 3:30pm PT. Learn more and register.
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Gene Therapy in a Capitalist Economy
Pete Shanks, Biopolitical Times | 04.29.2024
Multi-million dollar price tags limit the power of innovative gene therapies. Without innovations in research funding and product pricing, gene therapies will reinforce social inequalities in healthcare.
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End of the Future of Humanity
Pete Shanks, Biopolitical Times | 04.25.2024
Oxford’s Future of Humanity Institute has been closed by the university. This is good news for the future of humanity.
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GENE EDITING | GENE THERAPY | EUGENICS
ASSISTED REPRODUCTION | VARIOUS
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A woman with failing kidneys receives genetically modified pig organs
Rob Stein, NPR | 04.24.2024
In response to recent transplants of genetically modified pig kidneys, bioethicist L. Syd Johnson commented, “I do worry about whether or not we are taking advantage of particularly vulnerable and desperate patients in conducting these experiments.”
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Prime editing deal flurry to nail down patent rights
Carrie Arnold, Nature Biotechnology | 04.17.2024
Patent and licensing concerns involving “gobsmacking sum[s] of money” have motivated some scientists and industry researchers to develop alternative base and prime gene editing strategies.
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The DNA Test Delusion
Kristen V. Brown, Bloomberg | 05.14.2024
The predictions that genomic data would revolutionize healthcare through prediction face skepticism with the decline of companies including 23andMe. A growing contingent of researchers is starting to question whether genetic data simply isn’t of much use to the average person.
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Boy Dosed with Pfizer DMD Gene Therapy Dies a Year after Phase II Trial
Alex Philippidis, Genetic Engineering & Biotechnology News | 05.07.2024
After a young boy died in a trial for Pfizer’s experimental gene therapy for Duchenne muscular dystrophy, the company paused the study. It has not yet determined whether the death was linked to the experimental treatment.
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First Patient Begins Newly Approved Sickle Cell Gene Therapy
Gina Kolata, The New York Times | 05.06.2024
A 12-year-old boy from a suburb of Washington became the first person in the world with sickle cell disease to begin a commercially approved gene therapy that may cure the condition. It will involve a lengthy and arduous process of removing, genetically modifying, and re-infusing his stem cells.
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A Eugenicist History of the County Fair
William Schulz, The Boston Globe | 05.01.2024
Baby contests, popular in the early 20th century in the United States, were aligned with and often sponsored by organizations espousing eugenics, which hoped to promote racist notions of white infants’ superiority.
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A gay couple couldn’t access IVF benefits. They’re suing New York City.
Maham Javaid, The Washington Post | 05.09.2024
A class-action lawsuit filed by a same-sex married couple alleges that New York City is discriminating against male couples and violating federal, state and local laws by denying them IVF insurance benefits that other city employees are able to access.
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The Body She’s In
Lauren Quinn, Hazlitt | 05.01.2024
Prenatal genetic screenings claim to give parents more information about their future children, but tests that flag fetal anomalies are often accompanied by ableist assumptions that see people with disabilities as burdens.
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America’s IVF Failure
Emi Nietfeld, The Atlantic | 05.02.2024
Polygenic risk assessments, which clinics pitch to parents as providing the ability to select embryos at lowest genetic risk for obesity, bipolar disorder, and other conditions, have been dubbed “Eugenics 2.0.” Such tests are banned in several countries, but proceed unregulated in the US.
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Inside the opaque world of IVF, where errors are rarely made public
Lenny Bernstein and Yeganeh Torbati, The Washington Post | 04.28.2024
Most IVF errors and accidents go unreported in the largely self-regulated fertility industry. There is no requirement that errant episodes be reported to the government, the public, any professional organization, or even patients.
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In Medicine, the Morally Unthinkable Too Easily Comes to Seem Normal
Carl Elliott, The New York Times | 05.07.2024
From the Tuskegee syphilis study and the Willowbrook hepatitis studies to the more recent revelations about pelvic exams conducted on people under anesthesia without their consent, medical contexts encourage healthcare providers to accept atrocity as a medically justified status quo.
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Scientists are trying to get cows pregnant with synthetic embryos
Antonio Regalado, MIT Technology Review | 05.06.2024
Researchers are trying to use stem-cell based “synthetic embryos” to start pregnancies in cows. They claim this would revolutionize cattle breeding, but ethical issues with the practice and its potential uses abound. The implications for research using synthetic human embryo models are also alarming.
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