October 26, 2023

“Whether” or never: Reproductive genome editing in humans

Isabelle Bartram, Guest Contributor, Biopolitical Times | 10.10.2023

In the concluding statement of the 2023 international gene editing summit, one little word – “whether” – should be understood as an urgent invitation for civil society to participate vigorously in the debate about the future of germline interventions.

GENE THERAPIES | GENOMICS | EUGENICS 

SYNTHETIC EMBRYOS AND STEM CELLS | VARIOUS

Most of today’s gene therapies rely on viruses—and that’s a problem

Tina Hesman Saey, Science News | 10.20.2023

Early gene therapies used retroviruses, which often insert their DNA cargo near active genes. Today, most therapies rely on viruses engineered to deliver their cargo to safer locations and to cause less of an immune response. But still, the track record is far from spotless.

New Trials Aim to Restore Hearing in Deaf Children—With Gene Therapy

Emily Mullin, Wired | 10.20.2023

Two companies have launched clinical trials to test experimental gene therapies that aim to restore hearing to children with a rare type of genetic deafness. Some argue that implanting Deaf children before they have a chance to acquire language denies them autonomy and access to Deaf culture.

Why We Should Care About the Move from Saliva to Living Cells in Precision Medicine

Adithi Iyer, Bill of Health | 10.17.2023

Thus far, direct-to-consumer genetic testing has relied on saliva-sample sequencing. Regenerative medicine, which uses cells and tissues, intensifies concerns about privacy, data protection, and corporate interests.

Gene therapies for rare diseases are under threat. Scientists hope to save them

Heidi Ledford, Nature | 10.06.2023

Some companies have abandoned gene therapies because the small number of patients they might benefit made them unlikely to turn a profit. Scientists are turning to other potential sources of support, including charities.

New initiative aims to sequence half a million genomes of people with African ancestry for health studies

Rodrigo Pérez Ortega, Science | 10.18.2023

In an attempt to address the lack of diversity in genomic databases, a collaboration between pharma companies and a historically Black medical college aims to create the largest ever database of genomes exclusively from people with African ancestry.

Over the counter genetic tests in UK ‘fail to identify 89%’ of those at serious risk

Denis Campbell and Nonyelum Anigbo, The Guardian | 10.17.2023

An in-depth review of polygenic risk scores found that they wrongly tell one in 20 people who receive them they will develop a major illness, even though they do not go on to do so. Further, genetic tests that claim to assess the risk of cancer or heart problems fail to identify 89% of those in danger of developing related diseases.

Do Early R.S.V. Vaccine Trials Have a Henrietta Lacks Story?

Charles M. Blow, The New York Times | 10.11.2023

In the 1960s, some of the first and youngest subjects in a clinical trial to develop R.S.V. vaccines were Black and poor children, some in foster care. Two of them died. Archival documents indicate that their parents did not consent to their children receiving the experimental shot. What are the families of the children involved in those experiments now owed?

23andMe user data targeting Ashkenazi Jews leaked online

Kevin Collier, NBC News | 10.07.2023

Hackers have compiled a giant apparent list of people with Ashkenazi Jewish ancestry taken from 23andMe. The list, which is now being shared on dark web forums, has emerged during a time of increased anti-semitic attacks on Jews in the U.S.

F.D.A. Moves to Regulate Lab Tests That It Says Put Patients ‘at Risk’

Christina Jewett, The New York Times | 09.29.2023

Hundreds of lab tests on the market, including prenatal genetic tests, have very little oversight and may be misleading to the public.The FDA has proposed a rule that would require laboratories conducting these tests to provide data on their accuracy. 

‘Techno-Optimism’ is Not Something You Should Believe In

Jag Bhalla and Nathan J. Robinson, Current Affairs | 10.20.2023

Billionaire tech investor Marc Andreessen’s recently published manifesto for “techno-optimism” is just another example of the dangerous TESCREAL bundle of ideologies that come uncomfortably close to those of classical eugenics.

Canada Will Legalize Medically Assisted Dying For Eligible People Addicted to Drugs

Manisha Krishnan, Vice | 10.19.2023

Canada will legalize medically assisted dying for people who are addicted to drugs next spring, in a move some drug users and activists are calling “eugenics.” They advocate for more assistance in drug use cessation instead of a focus on aid-in-dying.

California’s Reproductive Freedom Efforts Should Meaningfully Include People With Disabilities

Joelle Boxer, Bill of Health | 10.18.2023

California has made strides in legislation on reproductive healthcare, but the state still has work to do to include Californians with disabilities, who experience wide disparities in accessing reproductive healthcare rooted in a long history of oppressive reproductive control.

‘Babies Are Good. More Babies Are Better’: Pro-Natalism Takes Center Stage in Austin

Shoshanna Ehrlich, Ms. Magazine | 10.17.2023

The upcoming Natal Conference aims to turn around the world's “shrinking population.” Its claims of being apolitical and non-ideological mask a far more insidious agenda — one that promotes right-wing tropes rooted in eugenics and misogyny.

They Were Given IUDs as Children Without Their Consent. Now, They Want Compensation.

Isabella Kwai, The New York Times | 10.03.2023

Dozens of indigenous women in Greenland say Danish doctors inserted intrauterine devices without their consent in the 1960s and 1970s. They are now seeking damages from the Danish government.

This biotech CEO decided to take her own (fertility) medicine

Antonio Regalado, MIT Technology Review | 10.16.2023

A New York startup is engineering stem cells to craft a “lightweight” version of IVF that they hope will appeal to busy, “professional” women. Critics are skeptical of the procedure’s effectiveness and of the CEO’s exaggerated claims.

What the Law and Bioethics Tell Us About Synthetic Human Embryos

Barbara Pfeffer Billauer, Bill of Health | 10.13.2023

Advances in developing synthetic embryos from pluripotent stem cells demand more consideration of ethical and legal questions related to the regulation of embryo research, ownership over synthetic embryos, and organ transplantation

Japanese scientists race to create human eggs and sperm in the lab

Rob Stein, NPR | 09.28.2023

Japanese scientists who have made advances in IVG acknowledge, “There are so many ethical problems.” Although researchers continue to develop the technique, there is evidence that the Japanese public does not support applications of IVG to fertility.

Health providers say AI chatbots could improve care. But research says some are perpetuating racism

Garance Burke and Matt O’Brien, Associated Press | 10.20.2023

A new study found that AI chatbots including ChatGPT and Bard appear to reinforce long-held false beliefs about biological differences between Black and white people, prompting concerns that the use of tools in healthcare could worsen health disparities for Black patients.

Gene-edited chickens to combat bird flu: Saviour or liability?

Claire Robinson, GMWatch | 10.19.2023

Scientists at the University of Edinburgh’s Roslin Institute—the animal research center where Dolly the sheep was created—have used CRISPR gene editing to develop chickens resistant to avian flu. But there are serious risks and limitations in the research, which were indicated by the scientists involved but largely ignored or downplayed by mainstream media outlets.

No One Should Die Waiting for an Organ Transplant. These Doctors Want to Ensure That Doesn’t Happen

Tanya Lewis, Scientific American | 10.18.2023

Because the demand for organs still far outstrips the supply, researchers have turned to animal organs to address the shortage. Growing organs for transplant in animals bred for this purpose raises ethical questions related to both human and animal welfare.

AI was asked to create images of Black African docs treating white kids. How’d it go?

Carmen Drahl, NPR | 10.06.2023

A researcher told an AI image generator to construct images of "Black African doctors" tending to "white suffering children" to flip the "white savior" stereotype. The program still always depicted children as Black and sometimes depicted doctors as white.

Myopic View of Xenotransplantation

Franklin G. Miller, Hastings Bioethics Forum | 09.25.2023

Xenotransplantation experiments tend to attract media attention, but this coverage obscures the need to support preventive treatments to address chronic disease and distracts from risks of animal exploitation in the experiments.

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