Transplants, NIH, Conspiracy Theories, the Trolley Problem & the Milky Seas
🚋 Curious Bioethics Round-Up: what I'm reading, watching, and loving lately
Hello, my Curious Readers,
Here’s what I’m reading, watching, and loving lately.
What I’m Reading?
Jump to: Heavy Metal Bioethics, Avoidable US Mortality, Immigration Agents at American Universities, Ongoing Chaos at the NIH.
Organ Transplant System ‘in Chaos’ as Waiting Lists Are Ignored: The sickest patients are supposed to get priority for lifesaving transplants. But more and more, they are being skipped over.
I’ve been a pediatric transplant anesthesiologist for a decade. The waiting list for organs is a huge deal - the difference between life and death for thousands of patients per year. Waitlist mortality is the phrase used to describe death while waiting for an organ to be available. According to UNOS (the United Network for Organ Sharing1) 90,000 people are on the kidney transplant waiting list, and 11 people die every day before an organ becomes available.
Even if you get a transplant, waiting longer for an organ can also mean having worse outcomes after you get an organ.
The New York Times exposé starts with a specific patient - Marcus Edsall-Parr - a 15-year-old boy who has been on the waiting list most of his life. If you’ve ever wondered how the transplant waiting list is supposed to work and how it’s being side-lined, the authors explain it clearly. They also highlight the complex interplay among U.S. Organ Procurement and Transplantation Network (OPTN), UNOS, the local organ procurement organizations (OPOs), transplant doctors, and patients. They describe how poor oversight of OPOs can lead to major ethical violations.
“They are making a mockery of the allocation system,” said Dr. Sumit Mohan, a kidney specialist and researcher at Columbia University. “It’s shocking. And it’s going to destroy trust in the system.” - NYT
What makes this article extra special are the graphic representations employed to help everyday people visualize the injustice happening on the waiting list. Here’s an example:
🎸 Heavy Metal Bioethics
I had never thought much about Alzheimer’s disease, other than to hope that I never suffer from it. But after attending a heavy metal concert, my ears still ringing from the blaring wall of amps, that fateful condition began to weigh on my heart and mind. The songs the band performed that evening were about a character sliding into the mental abyss of Alzheimer’s disease. - David E. Nantais in Heavy Metal Bioethics
You can listen to The Reticent’s album that inspired the essay, The Oubliette. The album tells the story of Henry and his descent through the seven stages of Alzheimer's Disease.
Avoidable Mortality Across US States and High-Income Countries
This is a really interesting public health study looking at avoidable mortality - comparing the US overall and US states, to comparable countries.
Despite spending more on health care than any other high-income country, the U.S. has higher rates of avoidable mortality. These deaths could be prevented with timely, high-quality care. Comparing the US to 40 EU and OECD countries, the study found five key patterns:
Worsening Trends: From 2009 to 2019, avoidable mortality increased in all U.S. states but decreased in most comparator countries, highlighting systemic issues in U.S. health care and public health.
Growing Disparities: Variation in avoidable mortality widened across U.S. states but narrowed in other countries, possibly reflecting the U.S.'s fragmented policy landscape (e.g., differences in Medicaid expansion, gun laws, and social services).
Pandemic Impact: Avoidable mortality rose globally during COVID-19, but U.S. states experienced sharper increases, especially those with already poor health outcomes, suggesting weak resilience to health crises.
Socioeconomic Drivers: U.S. avoidable mortality was largely driven by preventable causes linked to broader socioeconomic factors, showing the need for multisectoral public health strategies beyond just clinical care.
Health Spending Disconnect: Unlike other countries, in the U.S. there was no clear link between higher health spending and lower avoidable mortality, raising concerns about the efficiency of the U.S. health care system.
Overall, the findings emphasize how U.S. state-level policy differences and broader social determinants of health critically shape population outcomes, and they call for coordinated, systemic interventions.
Immigration Agents Targeting Students Shows What The Government Really Thinks About Free Speech
I work at a university and we are shaken by the revocation of students’ Visas and immigration agents showing up on campus. This is happening at schools across the country with more than 500 students directly impacted by threats of deportation. Rumeysa Ozturk and Mahmoud Khalil are only two examples of how free speech is being attacked by the government:
at The Present Age writes: The ICE Detention of a Turkish Student Is a Serious Free Speech Test - How much do you really believe in free speech? writes The Constitution, in Name Only: Mahmoud Khalil and the Architecture of Lawless PowerNIH funding cuts for essential research, officials fired, put on leave, or “reassigned,” and other nonsense as RFK Jr and Jay Bhattacharya aggressively restructure the nation’s research agency
I wrote to you earlier this week about Dr. Christine Grady’s exile from the NIH and it’s potential to decrease safety for research participants. She’s not alone. There’s a rash of dismissals and reassignments in the agency. All of this appears to be a coordinated attack on the durability of research safety and ethical practice at the NIH. It’s also hella petty, with basically anyone connected to Anthony Fauci, under attack. Since Fauci directed the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) since 1984, that list is long.
at Inside Medicine: Respected NIH official put on leave, and it's pretty obvious why. writes Trump is attacking NIH because politicizing funding can force universities to become conservative thinktanks
Scientific American: The Science Fields and State Hit Hardest by Trump NIH Cuts, in 4 Charts: An analysis reveals which fields of science and U.S. states are being hit hardest by National Institutes of Health grant terminations
Another major casualty of RFK Jr’s version of public health? Cancelling research into vaccine access and vaccine hesitancy. I wish I was surprised, but I have been anticipating this wild ride for a while. Kennedy has been out and proud about his vaccine conspiracy theories and debunked claims for well over a decade. Seeing vaccine research hampered? Not a surprise.
The Sick Times: RECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive
Rather than promoting dissent at the NIH, Bhattacharya appears to want to simply eliminate dissent to his own ideas. Folks at the
liken his approach to a fantasy of incorrectness.Watching & Listening
CONSPIRACY | contrapoints
I love Contrapoints. This is an excellent long-form film about conspiracy theories - covering some of the foundational work on why people believe conspiracies, and how conspiracies can leap from fun what-if thought experiments to radicalization, leading to serious threats to the public.
Loving
404 Media’s coverage of a new paper on the Milky Seas.
Milky seas are produced by bioluminescent bacteria that can transform the nighttime ocean into a glowing white veneer. For centuries, seafarers have marvelled at the eerie beauty of these surreal displays, which sometimes last for months and can cover areas of 100,000 square kilometers (about the size of Iceland). - Becky Ferreira
You can read the full paper - with all the historical highlights - here: Hudson, Justin and Miller, Steve. “From Sailors to Satellites: A Curated Database of Bioluminescent Milky Seas Spanning 1600-Present.” Earth and Space Science.
Trolley Problem and Dating Advice
The Trolley problem is an old thought experiment asking if it’s ok to harm one person to save a larger group of people. Using stylized ethical dilemmas, it presses our beliefs about utilitarianism - the idea that we should do “the greatest good for the greatest number.” At what cost?
But that all feels pretty serious. Watching Jane Wickline give dating advice using a piano keyboard and the Trolley Problem is ethics niche funny.
What are you reading, watching, and loving? Are you doom scrolling? Are you avoiding the news? What are you doing instead?
Drop it in the comments.
UNOS is a federally contracted organization that manages the national transplant waiting list. UNOS is the sole contractor for the U.S. Organ Procurement and Transplantation Network (OPTN). UNOS is often criticized for creating a monopoly in running the transplant allocation system.
