August 24, 2023

“It’s a Way of Reparations”: Why Henrietta Lacks Settlement Matters for Bioethics & Racial Justice

Amy Goodman, Democracy Now! | 08.07.2023

“What happened to Henrietta Lacks didn’t just happen to her. It’s part of a long history of experimentation and exploitation of Black people in biomedical research. And that has been grounded on a racist myth of Black biological difference,” said CGS Advisory Board member Dorothy Roberts.

Human embryo replicas have gotten more complex. Here’s what you need to know

Tina Hesman Saey, Science News | 07.24.2023

Conversations with the public about whether and how to use embryo models need to start now. “The technical limits of what scientists can currently do with these models should not define the ethical discussion and what the ethical limits should be,” said CGS Associate Director Katie Hasson.

Inside a Ukrainian baby factory

Ilya Gridneff, Emily Schultheis and Dmytro Drabyk, Politico | 07.23.2023

CGS Associate Director Katie Hasson emphasized the need for safeguards in the surrogacy industry to protect women’s health and rights, as some medical procedures offered by global surrogacy firms pose significant health risks to surrogates.

Book Review: Mud, Blood, and Ghosts: Populism, Eugenics, and Spiritualism in the American West

Gabriela Corona Valencia, Guest Contributor, Biopolitical Times | 08.22.2023

Julia Carr’s meticulous exploration of her family’s complicity with eugenics in the late 19th and early 20th centuries challenges readers to confront the uncomfortable truth that individuals, even those we hold dear, can be both sources of inspiration and instruments of oppression.

Ineffective Altruism, Apocalypse, and Human Genetic Enhancement

Pete Shanks, Biopolitical Times | 07.21.2023

Court filings reveal that crypto-currency fraudster Sam Bankman-Fried was planning to build a bunker on a Micronesian island to shelter effective altruists from an apocalyptic event––and to carry out genetic enhancements.

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From Designer Babies to Devalued Children

Elayne Clift, Daily Kos | 08.18.2023

The idea of designer babies and perfect progeny smacks not just of social control but of affluence and exclusion. It illuminates the deep chasm between privilege and poverty, both of which speak to the deprivation of lives that might have been lived. Let’s not forget that eugenics was at the core of slavery and is still a threat in a world of growing fascism.

CRISPR causes serious DNA damage with high frequency – but it’s often overlooked

Claire Robinson, GMWatch | 08.09.2023

New research suggests that CRISPR-induced double-strand breaks in DNA cause numerous large unintended on-target genetic damages, including deletions, insertions, and chromosomal rearrangements of genetic material.

FDA’s Peter Marks says gene editing breakthroughs have met regulatory reality

Max Bayer, Fierce Biotech | 07.31.2023

An FDA official acknowledged a “backslide” in gene therapy advancements as researchers’ experimental therapies have hit regulatory snags. Potential therapeutic benefit to patients needs to be balanced with concern for possible off-target effects.

Genetic engineering giants: is China poised to lead the way?

Willow Shah-Neville, Labiotech | 07.19.2023

China is currently using the gene-editing tool CRISPR for a wide range of applications in agriculture, animals, and medicine, but its regulations for gene editing require further developments to align with international standards.

Inside the Smithsonian’s “Racial Brain Collection” & the Eugenics Project Behind It

Amy Goodman, Democracy Now! | 08.18.2023

Washington Post reporters Nicole Dungca and Claire Healy explain their investigation of the Smithsonian’s “racial brain” collection, which was largely put together with stolen specimens from people of color in the first half of the 20th century at the behest of Ales Hrdlicka, a racist anthropologist who was trying to scientifically prove the superiority of white people.

Why An Unremarkable Racist Enjoys the Backing of Billionaires

Jamelle Bouie, The New York Times | 08.12.2023

Why does an otherwise obscure racist have the ear and support of many powerful people in Silicon Valley? Because his interest in a hierarchical society built on racism serves their interest in a hierarchical society built on class—and ruled by capital.

The Ones We Sent Away

Jennifer Senior, The Atlantic | 08.07.2023

The U.S. has a long history of mistreating people with disabilities. The eugenics movement led to “undesirables” and “defectives” not only being institutionalized, but also being involuntary subjects of medical experiments and forced sterilization.

Compensation for forced sterilizations in California ends soon. Here’s how to apply

Emma Fox, Los Angeles Times | 08.04.2023

California’s Forced or Involuntary Sterilization Compensation Program expires at the end of 2023, but many who are eligible for compensation remain unaware of the program or can't easily apply for or receive compensation due to strict eligibility requirements.

New definition of a human embryo proposed amid rapid scientific advances

Megan Molteni, STAT | 08.17.2023

Advances in “stembryology” have led some researchers to propose a new definition of an embryo, but redefining the embryo is not enough: substantive public consultation is needed to develop policies that set limits on embryo research.

After 25 years of hype, embryonic stem cells are still waiting for their moment

Antonio Regalado, MIT Technology Review | 08.09.2023

Twenty years ago, unrealistic promises of stem cell cures made breakthroughs seem closer than they were. None has reached the market yet. Today, stem cell researchers say new clinical trials are a sign the field may be close to a turning point.

Synthetic human embryos could allow for research beyond the 14-day limit, but this raises ethical questions

Françoise Baylis and Jocelyn Downie, The Conversation | 07.25.2023

Because the 14-day limit on human embryo research in the U.K. does not apply to lab-created embryos, synthetic embryo research can proceed past 14 days, leaving the door to touted potential benefits–and ethical controversies–wide open. Different laws in Canada mean that synthetic human embryo research will remain limited there for the foreseeable future.

Insight: What happens when a $2 million gene therapy is not enough

Deena Beasley, Reuters | 08.16.2023

When gene therapies like Zolgensma fall short of curing a genetic disease, it becomes harder to justify the sky-high prices that researchers have argued are already poor value.

Gene Therapies For Eternal Youth

Stav Dimitropoulos, proto.life | 08.03.2023

Longevity startups are trying to develop gene therapy technologies to help people remain young, but critics worry that efforts to create a “techno-utopia” with costly, experimental therapies will introduce new problems and exacerbate existing inequalities.

The Gene Therapy ‘Quagmire:’ Multimillion- Dollar Costs and Untreated Patients with Rare Diseases

David Jensen, The California Stem Cell Report | 08.01.2023

Issues of affordability and accessibility delay evidence-based gene therapies from reaching those who might benefit from them. California’s stem cell and gene therapy agency is launching initiatives to try to help find or finance solutions.

China’s sitting on a goldmine of genetic data – and it doesn’t want to share

Jessie Yeung, CNN | 08.12.2023

The Chinese government is further expanding its genomic holdings with a “national genetic survey” that collects genetic information about its population, but it is wary of sharing data with international collaborators.

Henrietta Lacks’s family sues another pharmaceutical company

Clarence Williams, The Washington Post | 08.10.2023

Having settled a claim against one biotech company, the heirs of Henrietta Lacks have filed a lawsuit against another pharmaceutical company that profited from using cells without her consent. 

Bartering Your Eggs: A Rotten Deal

Arthur Caplan and Gwendolyn P. Quinn, Hastings Bioethics Forum | 08.17.2023

Clinics are offering free egg freezing to patients willing to give half their eggs to for-profit egg banks. The egg banks’ huge profits create tremendous conflicts of interest. The programs may also reinforce bigotry and exacerbate health and social disparities.

Spain is the egg donation capital of Europe – here’s what it’s like to be a donor

Anna Molas, The Conversation | 08.17.2023

While fertility clinics describe egg retrieval as “fast and easy,” the procedure can carry complications and its long-term risks remain unknown. As demand for eggs increases, including in Spain, urgent action is needed to inform and protect donors.

VA insurance won’t cover IVF for LGBTQ+ and unmarried veterans

Shefali Luthra, The 19th | 08.14.2023

A lawsuit filed in federal court would push the U.S. Department of Veterans Affairs to cover IVF for veterans who are single or in LGBTQ+ relationships. 

Italian parliament approves bill to criminalise surrogacy abroad

Angela Giuffrida, The Guardian | 07.26.2023

Continuing its efforts to curtail the rights of LGBTQ+ families, the Italian parliament has approved a bill that would make it a crime to travel abroad to have children via surrogacy. 

Hannah McCarthy travels to Kenya and finds a growing number of surrogate cases there

Hannah McCarthy, The Journal | 08.07.2023

Some Irish parents pursue surrogacy arrangements in Kenya because it is more affordable there, but the global inequalities that lower its cost also make the country less capable of supporting the health of surrogates and preventing their exploitation.

AI Causes Real Harm. Let’s Focus on That over the End-of-Humanity Hype

Emily M. Bender and Alex Hanna, Scientific American | 08.12.2023

Effective regulation of AI needs to be grounded in science that investigates real harms, including racial discrimination built into algorithms and wrongful arrests, instead of focusing on hypothetical existential risks. 

Eight Months Pregnant and Arrested After False Facial Recognition Match

Kashmir Hill, The New York Times | 08.06.2023

Relying on faulty results from automated facial recognition technology, which has a history of inaccurately identifying Black offenders, Detroit police falsely accused, detained, and charged a Black woman who was 8 months pregnant with robbery and carjacking. 

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