On December 9, 2025, she will give a public lecture at the University of Pennsylvania on the legacy of her work.

What Makes Clinical Research Ethical?: A Twenty-Five Year Journey and Look to the Future

Speaker: Christine Grady, MSN, PhD

Former Chair, Department of Bioethics, NIH Clinical Center

Recognizing some uncertainty about the ethics of clinical research and differences in interpretation and implementation of existing guidance, 25 years ago, Dr. Grady and colleagues developed a framework to help investigators, reviewers, and interested others design, implement, and evaluate ethical clinical research. The framework, consisting initially of seven (and later eight principles), resonated with many around the globe.

In 2000, the NIH Clinical Center researchers published seven main principles to guide the conduct of ethical research:

• Social and clinical value

• Scientific validity

• Fair subject selection

• Favorable risk-benefit ratio

• Independent review

• Informed consent

• Respect for potential and enrolled subjects

Since then, the framework has been used, debated, and cited in academic publications, national guidelines, presentations, and discussions across a wide spectrum of clinical research. In this presentation, Dr. Grady will discuss the origins of the framework, its contents and elements, how it has been used, some challenges, and where more work could be useful.

Dr. Grady has published widely in the biomedical and bioethics literature and authored or edited several books, including The Oxford Textbook of Clinical Research Ethics. Her work is known internationally, and she has lectured widely on ethical issues in clinical research and clinical care, HIV disease, and nursing.

Read more on ELSIHub.

• Where: UPenn Medical Ethics and Health Policy

• When: December 9, 2025

• How: Register to attend virtually

• Cost: Free

Rockefellers, Root Canals, and “Race Records”

The Toothache Blues and the Story of Dentistry Reform in Interwar Harlem

Bronwen McVeigh, a post-doctoral fellow at the University College Dublin, currently uses her PhD in Historical Musicology to study the blues in relation to endemic illness, dental hygiene, public health campaigns, and political fractures within and beyond African American communities in interwar America.

• Sponsor: National Collaborative on Humanities & Ethics in Dentistry (NCHED)

• Speaker: Bronwen McVeigh, PhD

• Date: September 30, 2025

• Time: 10 AM (PT)/11 AM (MST)/12 PM (CT)/1 PM (ET)

• Location: ZOOM

• Register: Here

• Continuing Education Credits: Available for dental professionals

LEARNING OBJECTIVES

1. Analyze blues narratives alongside materials from Harlem-based public health campaigns to uncover themes of alienation and access barriers within dentistry.

2. Foster critical thinking about how artistic expressions like blues can serve as visceral records of community experience, deepening our understanding of the triumphs and failures of campaigns aiming to improve dental hygiene among lower-income African American communities in interwar Harlem.

3. Better understand ongoing challenges in broadening healthcare access and achieving patient trust by examining understudied historical primary source materials.

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When Care Comes First

A Radical Reimagining of Medical Ethics

35th Annual Jonathan J. King Lecture at Stanford University

Arthur Kleinman, MD, author of the acclaimed The Illness Narratives: Suffering, Healing, and the Human Condition, is a world-renowned expert and luminary whose influential career spans anthropology, global health, ethics, psychiatry, and narrative and cultural medicine.

In this timely and thought-provoking lecture, Dr. Kleinman will explore the moral dimensions of caregiving and propose a transformative vision for the future of ethical medical practice.

Educated at Stanford and a distinguished professor at Harvard for nearly five decades, Kleinman has notably served as Chair of both Harvard’s Department of Social Medicine and Department of Anthropology and directed Harvard’s Asia Center.

He is also the author of multiple books, including The Soul of Care, and co-editor of seminal volumes such as Reimagining Global Health. Kleinman's prestigious accolades include membership in the National Academy of Medicine, a Guggenheim Fellowship, and the Franz Boas Award from the American Anthropological Association. A revered mentor, Kleinman has guided generations of scholars in transforming global perspectives on health and human suffering.

• Sponsor: The King Lectureship at Stanford Center for Biomedical Ethics

• Speaker: Arthur Kleinman, MD

• Date: Tuesday, October 14, 2025

• Time: 5:30 PM (PT)/ 6:30 PM (MST)/7:30 PM (CT)/8:30 PM (ET)

• Location: Hybrid - Stanford Faculty Club and Zoom

• Register:

  • Virtual registration (Hors d’oeuvres reception will follow the lecture)

  • In-person registration

You can learn more about Jonathan King and his legacy on the King Lectureship page.

Here’s what I’m reading, watching, and loving this week. I hope you do too.

Reading

Abortion

1. Blood Transfusions for Texas Miscarriages Increased by Over 50% by

   • Dear reader, blood transfusions are not benign. This degree of increase in transfusions is an indicator of how far we are from providing high-quality care to these patients.

2. People in states with abortion bans are twice as likely to die during pregnancy by Shefali Luthra

3. Nearly 1 in 4 out-of-state abortion patients come to Illinois, new report finds by Kaitlin Washburn

   1. Data used in this article is sourced from Stability in the Number of Abortions from 2023 to 2024 in US States Without Total Bans Masks Major Shifts in Access by Isaac Maddow-Zimet and Kimya Forouzan

4. Conservatives Think This Study Will Kill Abortion Pills by Jessica Valenti

American Federal Budget Cuts

1. The Cruelty of the OMB Budget Proposal: An Advocacy Guide for Public Health by Thomas Farley

2. Death By A Thousand Budget Cuts: From cancer screening to outbreak response, programs saving millions of lives are being eliminated, and your community will pay the price at

3. This list of terminated USAID awards should break your heart. New study finds cuts will cause 14 million deaths by 2030 from at Inside Medicine.

4. Scientists fear Trump administration cuts to NIH could impact the health of Americans for generations by Sharyn Alfonsi

5. Fired, rehired, and fired again: Some federal workers find they’re suddenly uninsured by Andrea Hsu

Public Health

1. USA FDA asks Novavax to complete new clinical trial for delayed COVID-19 shot, WSJ reports by Reuters

2. With Sadness and Resolve: Why I Resigned as Chief Medical Officer of an NIH Institute and What Comes Next by Joshua P Fessel

3. No, RFK Jr., Autism Doesn’t Need a Cure by Gisselle Ramirez

Knowledge Accessibility

1. NIH Public Access Policy Now Mandates Zero Embargo Effective July 1, 2025 by the CITI Program Staff

2. Book bans aren’t stopping at libraries — now Texas is targeting bookstores by Brammhi Balarajan

Health Conspiracies, Influencers, Misinformation

1. Marianna in Conspiracyland Podcast (ok so this is listening, but whatever)

2. 15 million Americans take supplements that may be toxic to the liver by Sam Page

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Watching

1. Judith Butler on the beginning of feminism

2. RFK Jr. & HHS: Last Week Tonight with John Oliver (HBO). RFK Jr is a nightmare for American health. John Oliver does his thing in this video.

Loving

1. Don’t Normalize My Little Girl’s Pain

2. PhD Timeline from xkcd.com. I hate the reality that led to this cartoon, but I do love how cartoonists use their brilliance to make us look at what is uncomfortable in a new light.

   

3. Quilters are stepping up their game. I love crafting and am forever impressed by the complicated art folks make from colorful scraps of fabric. This is pretty incredible.

What are you reading, watching, and loving this week? Drop it in the comments.

On February 19, Ms. Smith was declared dead by neurological criteria.

Due to Georgia’s barbaric anti-abortion/fetal life laws, the hospital claims they cannot withdraw the ventilator and other treatments that do not benefit Ms. Smith directly.

I Encourage You to Read

More to Hate

Of Georgia, Where Death Offers No Escape from Misogyny

Adriana Smith, a thirty-year-old woman, was declared brain dead in February. She had been suffering from intense headaches and went to Atlanta’s Northside Hospital, where she was sent home with medication. The next morning, she was gasping for air: her boyfriend called 911. But it was too late: Emory University hospital found blood clots in her brain. It was impossible to save her…

Read more

a year ago · 77 likes · 14 comments · Kate Manne

THE F.A.F.O. NEWSCAST

Adriana Smith Deserved to Be Heard: When Abortion Bans and Medical Racism Collide

Read more

a year ago · 12 likes · 1 comment · Patricia Bee

Read more about the case here:

19th News: Case of a brain-dead pregnant woman kept on life support is ‘gut-wrenching,’ advocates say: Adriana Smith’s case is the latest instance in which Georgia’s six-week abortion ban and its impacts on Black women have raised serious concerns.

Papers I Mentioned

Sperling D. Should a Patient Who Is Pregnant and Brain Dead Receive Life Support, Despite Objection From Her Appointed Surrogate? AMA J Ethics. 2020 Dec 1;22(12):E1004-1009. doi: 10.1001/amajethics.2020.1004. PMID: 33419499.

Dodaro MG, Seidenari A, Marino IR, Berghella V, Bellussi F. Brain death in pregnancy: a systematic review focusing on perinatal outcomes. Am J Obstet Gynecol. 2021 May;224(5):445-469. doi: 10.1016/j.ajog.2021.01.033. Epub 2021 Feb 16. PMID: 33600780.

Thank you!

Thank you , , , and many others for tuning into my live video! Join me for my next live video in the app.

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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.

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:

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🎸 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:

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1. 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.

2. 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).

3. 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.

4. 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.

5. 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 Power

NIH 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.

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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.

• 🗞️Bioethics News: United CEO shooting and public response, charlatan oncologist

• 📚Recommended Reading: on being Trans in Trump’s America

• 🦉Educational Opportunities: Medical/dental integration with Nanette Elster

Happy Sunday, My Curious Readers!

I’ve been on a combo of ethics call and transplant call for the last two weeks, and it’s been a doozy. The work remains interesting, even if I’ve been exhausted.

Saturday was my first day off, and I very much enjoyed putting my work phone on Do Not Disturb.

Saturday was an altogether lazy day in the best way. I filled my creativity cup by attending Writing Medicine with my genius pal, . I sharpened knives - an under appreciated relaxing past time (though my favorite time to sharpen is when I can work from home and attend a zoom meeting with my camera off). At the end of the day, I made a delicious cake from Dessert Person - perhaps the best dessert cook book of all time (it has a chart showing difficulty on one axis and how much time it takes to make on another and this is the decision aid I always need).

What are you doing to fill your cup during these days when the sun sets so dang early?

🗞️ Bioethics in the News

UnitedHealthcare CEO’s shooting opens a door for many to vent frustrations over insurance

Brian Thompson was murdered on a midtown Manhattan street early on Wednesday when a gunman shot him and then rode away on a bicycle.

In a true testament to Americans’ unbridled hatred of our abysmal insurance industry, the killing of UnitedHealthcare’s CEO garnered emotions from ambivalence to mockery.

According to police, the bullet casing had the phrase “delay” and “deny” written on it with a Sharpie marker - presumably alluding to the methods routinely used by insurers to deny claims. Jay Feinman’s 2010 book Delay, Deny, Defend criticizes the insurance industry.

If you’re dealing with claim denials, you have a right to know the grounds of the denial. You can use ProPublica’s guide explaining how to submit a claim file request to get that information. They also have resources for healthcare providers.

“Eat What You Kill”

Hailed as a savior upon his arrival in Helena, Montana, Dr. Thomas C. Weiner became a favorite of patients and his hospital’s highest earner. As the myth surrounding the high-profile oncologist grew, so did the trail of patient harm and suspicious deaths.

Thomas Weiner was a beloved oncologist, treating an outsized number of patients in his practice. He ensured he remained the only oncologist in the hospital system. He also made himself the primary care physician for his oncology patients, in addition to being their cancer physician. Not only did this enrich Weiner, but it also minimized the amount of insight any colleagues might have into his harmful practices. He kept illegible and minimal records, and prescripted narcotics by hand, bypassing safety checks. This all made it possible for an oncologist to do the unthinkable - to treat patients without cancer diagnoses with powerful chemotherapy drugs, including experimental treatments. Other patients suffered delayed diagnoses of actual cancer. Countless patients were prescribed high doses of opioids for nonsensical reasons.

Medicine relies heavily on self-regulation. In a deferential environment, it can take a while for other clinicians to see red flags. It takes moral courage and psychological safety to escalate those concerns. Weiner seems to have had a cult-like following in the hospital and orchestrated votes of no confidence against administrators who questioned his practices and pay. Numerous clinicians made their concerns known, and an administrator acted to get more evidence; it took years of investigation to get Weiner out of the hospital.

📚 Recommended Reading

Waking Up Trans in Trump’s America

by Gabrielle Bellot

Read the full essay on LitHub.

🦉Educational Opportunities

The Ethical Imperative for Medical/Dental Integration

Speaker: Nanette Elster, JD, MPH

Nanette Elster is a national expert in dental ethics - and one of my professors when I was in my masters in bioethics and health policy program. This should be a very informative talk for anyone interested in the wild past of how the bones in our mouth came to be managed by a totally different profession than the rest of our bodies.1

Learning Objectives:

1. Understand the history of medical/dental integration.

2. Identify current challenges to medical/dental integration.

3. Examine ethical underpinning of both medicine and dentistry for better coordination.

Presented by Colorado University and the National Collaborative on Humanities & Ethics in Dentistry

• Date: Thursday, December 12, 2024

• Time: 12:00 - 1:00 PM (MT)

• Location: Virtual (Register for the Zoom link)

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

In today’s curated collection, you’ll find:

• 🗞️Bioethics News: IV fluid shortage persists, Georgia dismisses maternal death oversight committee, abusive urologist sentenced to life in prison

• 📚Recommended Reading: on living in fear of Alzheimer’s Disease

• 🦉Educational Opportunities: How Healers Became Killers: Nazi Doctors and Modern Medical Ethics

Happy Sunday, My Curious Readers!

Thank you so much for those of you who took the time to reply to my last few essays. I appreciate hearing from you!

This weekend, we got our family caught up on flu and COVID vaccines. I’d gotten mine at work but needed to find a local pharmacy equipped to vaccinate kids. Thankfully, the process of booking multiple appointments has improved dramatically in the years since the pandemic began!

My kids were not impressed with the pharmacy’s branded bandaids, so they decorated themselves with corgi butt stickers. Feel free to do the same!

🗞️ Bioethics in the News

North Carolina Baxter Plant Ships first IV Fluids post-Hurricane Helene

National IV Fluid and Dialysis Fluid Shortages Persist

While invisible to most people out of the hospital and out of dialysis centers, the US is still in a significant IV fluid shortage after Hurricane Helene took out a major US production facility.

If resources become extremely scarce, a hospital can end up in crisis care - where there isn’t enough of a specific resource to provide the standard of care treatments to patients. One way to prevent that during the IV fluid shortage is to cancel or delay some surgeries. Hospitals are moving fluids around and reducing IV fluid infusions, trying to conserve supplies for people who can’t safely receive alternative treatments for hydration.

Thankfully, the Baxter facility continues to make progress, and late last week was able to ship out 1-liter IV bags. Hospitals and dialysis centers are eager for dialysis fluid production to restart. Baxter projects this will be possible by early December.

Georgia Dismisses All Members of Maternal Mortality Committee After Leak About Patient Deaths

In September 2024, ProPublica released a story about deaths in Georgia after physicians delayed offering appropriate medical and surgical care in the setting of Georgia’s severe abortion restrictions. This included the story of a young mother, Amber Thurman, who died of sepsis after her dilation and evacuation was delayed for almost a full day. She is survived by her young son.

When the Georgia Department of Public Health couldn’t find the leak, they dismissed all 32 committee members.

In a November 8th letter, Dr. Kathleen Toomey, commissioner of the state Department of Public Health wrote “Confidential information provided to the Maternal Mortality Review Committee was inappropriately shared with outside individuals… Even though this disclosure was investigated, the investigation was unable to uncover which individual(s) disclosed confidential information… Therefore, effective immediately the current MMRC is disbanded, and all member seats will be filled through a new application process.”

Urologist and sexual predator Dr. Darius Paduch sentenced to life in prison

On Wednesday, November 20, 2024, urologist Darius Paduch, was sentenced to life in prison for sexually abusing patients, including children.

Paduch, former director of sexual health and medicine at NewYork-Presbyterian/Weill Cornell Medicine and Northwell Health, abused his position of power between at least 2007 and 2022. He used his power to lead survivors to believe that the abuse was medically indicated - a common tactic among abusive physicians. After being initially charged in December 2022, more survivors came forward, leading to a superseding indictment in October 2023. He was convicted in Federal court in May 2023. There are over 300 reported survivors. Given the generally low rate of reporting of sexual abuse combined with the number of years Paduch practiced, the number of actual survivors is likely in the thousands.

“Darius Paduch was a sexual predator who preyed on patients seeking treatment for sensitive medical issues. He used his position as a renowned urologist at prestigious hospitals to sexually assault vulnerable patients, including children, to gratify his own sexual desires.  Paduch’s abuse was perverse and pervasive, spanning over a decade and victimizing patients both inside and outside of hospital rooms.  He repeatedly violated his oath to ‘Do No Harm.’  Today’s sentence demonstrates that medical providers who exploit their position of trust to commit sexual abuse will be held accountable for their conduct.” - U.S. Attorney Damian Williams

I’ve written about poor self-regulation of physicians who sexually assault patients and how our medical culture often tolerates and covers up abuse. Physician leadership is part of the problem.

Nationwide Recall of Clonazepam Orally Disintegrating Tablets

Endo, the company that manufactures the popular anti-anxiety drug clonazepam, expanded its recall of orally disintegrating tablets due to mislabeling the dose of drug in its packages. The original recall was announced in July 2023.

Boxes of clonazepam may be mislabeled with the incorrect dose of medication. This can pose life-threatening risks to patients who may have boxes containing higher-dose pills than labeled. An overdose of clonazepam can cause sedation, confusion, dizziness, diminished reflexes, loss of muscle coordination (ataxia), and low muscle tone (hypotonia).

If you or a loved one take clonazepam, you can review the impacted lot numbers here. Check the box and the pill packet(s) inside to check that the dosage on the box and the pill packets are the same.

📚 Recommended Reading

An Ageist Disease: On Living in Fear of Alzheimer’s

Andrea Gilats Explores Confounding Questions of Aggression, Identity Shifts, and Care for the Afflicted

Read on LitHub.

🦉Educational Opportunities

No registration is required! Just go straight to YouTube for this on-demand bioethics education.

How Healers Became Killers: Nazi Doctors and Modern Medical Ethics

by Matthew Wynia, MD, MPH

The video is a recording of a lecture bioethicist Dr. Matthew Wynia gave in January 2024.

“Presentation by Matthew Wynia, MD, MPH, Professor of Medicine at the University of Colorado School of Medicine and Director of the Center for Bioethics and Humanities. This Program on International Holocaust Remembrance Day, January 29, 2024, was co-sponsored by the Center for Bioethics and Humanities-Holocaust, Genocide, and Contemporary Bioethics Program at the University of Colorado Anschutz Campus, ADL Mountain States, National Jewish Health, and the University of Denver, Holocaust Awareness Institute.”

You can also read “The Lancet Commission on medicine, Nazism, and the Holocaust: historical evidence, implications for today, teaching for tomorrow.” While the associated essays appear to be behind a firewall, you can read them for free by registering your email address.

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

In today’s curated collection, you’ll find:

• 🗞️Bioethics News: Wisconsin judges serve up repro justice comebacks, US health insurance subsidies, telemedicine extension, COVID test expiration dates extended

• 📚Recommended Reading: on the commodification of deaf language

• 🦉Educational Opportunities: Neonatologist Annie Janvier

Happy Sunday, My Curious Readers!

This week, a whole lot of people are leaving Twitter/X and many have flocked to Bluesky. I set up an account at Bluesky during the last Twitter exodus in 2023. With the recent influx of new users it finally feels like there are enough people there to be a sustainable and interesting alternative without being an alt-right hellhole.

It’s not so easy to abandon the communities built and maintained over at Twitter/X. I have Twitter to thank for so much of my education around disability justice. describes the challenges of leaving Twitter/X beautifully in The Xitter Exodus and What it Means for the Disability Community.

If you’re new to Bluesky this week, welcome! Here are two Starter Packs with bioethics and public health ethics folks.

🗞️ Bioethics in the News

It’s been a rough week, so enjoy some Wisconsin judges serving up justice about reproductive rights

If, like me, you’re generally full of rage at the state of the world, you may need a little delicious comic relief. I’ve watched this video of Wisconsin judges being badass several times and it hasn’t gotten old.

Trump Announces Cabinet of Cartoon Villians

I wrote to you earlier this week about one of Trump’s expected appointments - the notorious anti-vaxxer and conspiracy lover RFK Jr - as head of Health and Human Services.

But the rage machine has plenty more wacky, outrageous cartoon villain characters to put in immense positions of power. NY Mag’s Intelligencer describes Trump’s Cabinet picks as a cast of Dancing with the Stars.

As a professor of a course on the harms of sexual violence, the proposed appointment of Matt Gaetz - currently under investigation for sex trafficking a teenager - as Attorney General is exceptionally sleazy. But I can’t say I’m surprised by the president with a long list of sexual misconduct allegations and one conviction to his name.

Americans with ACA Health Insurance Plans at Risk

21.3 million Americans chose Affordable Care Act insurance plans in 2024. Enhanced federal ACA subsidies will expire in 2025, but with Republicans controlling the presidency, the House, and the Senate, they will likely be allowed to expire.

Without these subsidies, premiums will go up, making plans too expensive for many low-income Americans. Projections estimate approximately 4 million people will lose coverage.

You can review the Congressional Budget Office projections here.

DEA and HHS Extend Telemedicine Flexibilities Through 2025

On Friday, the Drug Enforcement Administration (DEA) and the Department of Health and Human Services (HHS) issued a final rule extending certain telemedicine prescribing flexibilities for one more year.

Telehealth provisions made during the height of the COVID were set to expire next month. However, it turns out telehealth is really popular and an effective way to get patients access to certain kinds of care without requiring arbitrary in-person visits.

After being flooded with public comments on the importance of telehealth, the agencies will waive the in-person visit requirement before the prescribing of certain controlled substances virtually. This waiver is effective until Dec. 31, 2025.

Free COVID Tests and Extended Expiration Dates

My free COVID tests just arrived, along with a reminder of the extension of expiration dates - allowing tests to safely be used longer.

Now available, U.S. households are eligible to order 4 free COVID-19 tests at www.COVIDTests.gov. The COVID-19 tests will detect current COVID-19 variants and can be used through the end of the year.

Many COVID-19 tests have extended expiration dates, so you may be able to use your COVID-19 tests after the expiration date that is printed on the box. To find out if your test has an extended expiration date, check the list of extended expiration dates.

Flu on the rise in many states

CDC data shows that flu infections are increasing in many states. According to the NIH “Each year in the United States, seasonal influenza, or flu, kills more than 36,000 people and hospitalizes 200,000 more.”

It’s not too late to get a flu shot - and your updated COVID shot.

📚 Recommended Reading

Signed Away by Sara Nović

Against the commodification of deaf communication

Read Signed Away at The Baffler.

🦉Educational Opportunities

No registration is required! Just go straight to YouTube for this on-demand bioethics education.

What Babies Can Teach Us About Life and Health | Annie Janvier

“In this heartfelt TEDx talk, Dr. Annie Janvier, Professor of Pediatrics and Clinical Ethics at the University of Montreal, shares profound insights from her work as a neonatologist and ethicist. Drawing on her personal experiences as a mother to children with healthcare needs, including one born at just 24 weeks, Dr. Janvier explores the lessons that premature and critically ill babies can teach us about resilience, life, and the complexities of healthcare. Her unique perspective sheds light on the challenges families face and the ethical questions that arise in critical care, encouraging us to view life and health through a compassionate lens. Dr Annie Janvier is a Professor of pediatrics and clinical ethics at University of Montreal. She is neonatologist and clinical ethicist at the Sainte-Justine University health center. She holds a PhD in Bioethics and co-directs the Masters and PhD programs in clinical ethics at University of Montreal. She works first hand with patients and families confronted with difficult decisions such as end-of-life issues, and decision-making in the face of uncertainty. She is also the parent of three children who had or have healthcare needs, one of which was born at 24 weeks.”

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: abortion ballot results, insurance subsidies expiration, RFK’s possible public health role

• 📚Recommended Reading: Kerri Kelly’s American Detox

• 🦉Educational Opportunities: Understanding Judith Butler’s work on gender, National Nursing Ethics Conference

• ⛑️ Job Opportunities: Become a Don’t Clock Out facilitator

Happy Sunday, My Curious Readers!

It’s been a week… not only did we finally finish years of election campaigning, it ended with a result that will definitely have some unique bioethics issues. I presume some of you dear readers continue to grieve after the election for so many reasons. If you missed this earlier this week, consider reading today.

America continues to deal with the fallout from Hurricane Helene, which took out a major IV fluid plant in North Carolina. As an ethicist, this has meant I’ve had a lot of extra, very important meetings about ethics things - like the standard of care and civil rights and just access to resources.

Sadly, on top of all that, I caught some miserable URI this week that has had me in bed, coughing, and using up every tissue in the house. Truly, I’m a disgusting, snotty person. Thanks to at-home COVID tests, I’m pretty sure it’s not that. My kid dressed up as a plague doctor for Halloween, but maybe we shouldn’t put the costume away yet so they can wear the creepy mask to check on me and my pile of tissues.

My house is still full of an outrageous amount of Halloween candy (which the kids separated into house candy, spare candy, and giveaway candy), so at least there’s plenty of sugar around to cope with.

🗞️ Bioethics in the News

Jessica Valenti’s 2024 Election Results: Abortion Ballot Measure Edition

Your guide to 10 key initiatives and amendments, and how they fared on Election Day

• Arizona Prop 139 – Passed

• Colorado Amendment 79 – Passed

• Florida Amendment 4 – Didn’t Pass

• Maryland Question 1 – Passed

• Missouri Amendment 3 – Passed

• Montana CI-128 – Passed

• Nebraska Initiative 439 – Didn’t Pass, Anti-Abortion 434 Passed

• Nevada Question 6 – Passed

• New York Prop 1 – Passed

• South Dakota Amendment G – Didn’t Pass

If you’re deeply interested in abortion (like me), consider subscribing to at .

NBC’s Millions at risk of losing health insurance after Trump's victory

Subsidies to buy insurance from the Affordable Care Act marketplaces are set to expire at the end of 2025. If they're not extended, coverage could become unaffordable for many.

The subsidies — which expire at the end of 2025 — came out of the 2021 American Rescue Plan, and increased the amount of assistance available to people who want to buy health insurance through the Affordable Care Act. The American Rescue Plan also broadened the number of people eligible for subsidies, extending them to many in the middle class.  

The looming expiration date means that the incoming Congress and next president will need to decide whether to extend them — something Trump and Republicans have already signaled they don’t support.

STAT News: What can Trump and RFK Jr. actually do on health care?

The meteoric rise of Robert F. Kennedy, Jr. to anti-vax, pro-health conspiracy fame placed him in Trump’s orbit. Big public health changes may lie ahead if RFK gets even part of what he wants. Read more on STAT News.

📚 Recommended Reading

American Detox

The Myth of Wellness and How We Can Truly Heal

by Kerri Kelly

Framed by Kelly’s experiences of loss in 9-11 and her journey down a wellness rabbit hole, American Detox expertly tells the story of a $650 billion-a-year industry that profits on Americans being chronically unwell.

If you’re looking for a basic primer on social justice and how the wellness industry interfaces with capitalism, this is a great start. The book covers the surface material well, but I personally would have liked to see more critique of white-centered wellness. If you’re already deep into a personal social justice educational journey, this book may not be meaty enough, but you’ll appreciate the well-cited resources and recommended reading list.

I’m a big fan of the author Kerri Kelly’s Newsletter:

WELLREAD

Everything you need to know to wake up, take action, and stay well.

By CTZNWELL

🦉Educational Opportunities

Philosophy Tube: on Judith Butler’s book Who is Afraid of Gender? (and Butlers other work)

No registration is required! Just go straight to YouTube for this on-demand bioethics education.

National Nursing Ethics Conference

Everyday Ethics Rooted in Trust

The call for Abstracts is open now. Click here for more details and to apply.

• When: March 13-14, 2025

• Where: UCLA Luskin Conference Center, Los Angeles, CA

• How: Register and see the program at https://ethicsofcaring.org/

⛑️ Job Opportunities

The healthcare worker organization Don’t Clock Out is recruiting Peer Support Co-Facilitators. They are looking for healthcare workers with experience in mental health care and/or facilitation. Pay includes $50 for facilitation hours and $25 for post-facilitation documentation. The Instagram reel has more info:

Don’t Clock Out is a 501(c)(3) mental health nonprofit founded and led by healthcare workers dedicated to supporting our community through the impacts of moral distress.

• Made of a coalition of healthcare workers & advocates dedicated to supporting healthcare worker wellbeing.

• Don’t Clock Out believes that through peer support, community & acknowledgment of the role of systemic exploitation, we can directly mitigate the impacts of moral distress & begin to reclaim our sense of purpose.

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Stay Curious,

Alyssa

In today’s curated collection, you’ll find:

• 🗞️Bioethics News: Female Surgeons’ Sexual Harassment; Child Poverty; How Liability Laws Impact Healthcare Access; What to Expect in Ob/Gyn Visits

• 📚Recommended Reading: A Good Man Is Hard To Find (on Danny Masterson and Ashton Kutcher)

• 🦉Educational Opportunities: Preventing Physician Death

Happy Sunday, My Curious Readers!

Shana Tovah!

I didn’t know that much about Judaism or Jewish culture growing up, but when I transferred to the University of Judaism in 2001 to study bioethics, that changed.

On a Tuesday shortly after my first semester started, the dorm room landline room rang loudly just after 6 am. My roommate groggily picked up the landline to hear her mom’s pressured speech, telling us two airplanes had flown into the World Trade Towers.

As New Yorkers were still digging through the towers' wreckage, hoping to find survivors, I celebrated my very first Rosh Hashanah. I listened to the shofar horn’s call. I ate fresh challah off thin paper plates, dipped apples in honey, and stained my fingers with pomegranate seeds. My friends laughed as I mimicked them, stuttering out “Leshanah tovah tikatevee vetichatemee” (“May you be inscribed and sealed for a good year”).

I learned about the Jewish New Year in my new school, with my new friends, and a new America where airplanes flew into buildings and killed thousands of people. It felt like a beginning we desperately needed while the national trauma unfolded. So for me, 9/11 is always connected to Rosh Hashanah.

I hope folks celebrating this year can hear the shofar, enjoy challah, apples, honey, and pomegranates, and be inscribed and sealed for a good year.

While I thought I had recovered when I wrote to you last week, the newsletter had only been out for a few hours when I developed symptoms of rebound Covid. I had been warned of covid rebound as a risk of Paxlovid, but it turns out it’s far more common with untreated covid (26% of untreated patients in one study). So I had to call out of work for another week. More fevers, more coughing. I’m getting better, but slowly.

The advice I keep getting - urgently and loudly - from everyone who knows me is to rest and take it easy. These folks know me and know I’m conditioned to go, go, go. But I’ve been trying to rest and relax.

I’ve streamed, I’ve read, I’ve napped…. I’m trying to rest like it’s my job.

🗞️ Bioethics in the News

Female surgeons sexually assaulted while operating

Female surgeons say they are being sexually harassed, assaulted and in some cases raped by colleagues, a major analysis of NHS staff has found.

The Working Party on Sexual Misconduct in Surgery (WPSMS) survey of 1,400 surgeons shows how sexual harassment and assault occur in operating rooms in the UK.

Two-thirds of women surgeons in the UK have been sexually harassed, and one-third report sexual assault by “colleagues.” 90% of women, and 81% of men, had witnessed some form of sexual misconduct.

With colleagues like this, who needs enemies??

If this news wasn’t bad enough, a recently retired UK anesthesiologist blamed women. Dr. Peter Hilton’s assertion that bullying happens and women surgeons simply need to “toughen up.” But women surgeons are already tough. Their toughness is not the source of the problem.

So long as we blame victims for the behavior of perpetrators, we will never fix toxic cultures.

Missouri Trans Clinic Closure Is A Page Out Of The Anti-Abortion Playbook

Liability laws significantly impact how medical care is provided. Anti-abortion laws are being repurposed to make providing gender-affirming care cost-prohibitive.

“These liability provisions make providing care prohibitively difficult. Firstly, their duration is much longer the typical liability timeframe associated with other medications and procedures. To put it in perspective, Missouri's medical malpractice lawsuits for all other medical procedures have a window of just 2 years. What amplifies the predicament is that there's no need to prove neglect—diverging sharply from standard malpractice suits where establishing neglect is pivotal. These specific provisions targeting gender-affirming and abortion care essentially render the practice financially untenable. Yet, the most most damaging aspect of these provisions is in the difficulty in fighting them in court.”

Erin In The Morning

Missouri Trans Clinic Closure Is A Page Out Of The Anti-Abortion Playbook

Read more

3 years ago · 138 likes · 25 comments · Erin Reed

Child Poverty is a Choice

The long-term consequences of child poverty are severe. Not only does this directly harm children’s access to nutrition and education, it also adds immense stress to their parents, which makes parenting so much harder.

In 2022, the child poverty rate spiked to 12.4%, a dramatic increase of 7.2 percentage points from the previous year, according to data released Tuesday by the U.S. Census Bureau. The increase in child poverty resulted in 5.28 million additional children living in poverty…

The massive increase in child poverty last year was a completely predictable and avoidable tragedy. Powerful people inside and outside the federal government chose to let this happen because they had other priorities. 

Despite the incredible success of the expanded Child Tax Credit in reducing child poverty in 2021, the government couldn't seem to prioritize kids in 2023.

Read ’s analysis of where the government spent our money instead.

Concerned About Your OB-GYN Visit? A Guide to What Should Happen — and What Shouldn’t.

Women reporting sexual assault by their gynecologists told ProPublica reporters they didn’t know what to a typical exam should be like. So the newspaper put together a great set of resources.

If you are uncomfortable, in pain or confused about what is happening, consider saying:

• “Can you please stop?”

• “Let’s talk about this.”

• “Can you explain why we’re doing this?”

📚 Recommended Reading

A Good Man is Hard to Find

Last week, The 70’s Show actor Danny Masterson was sentenced to 30 years in prison for 2 counts of felony rape. Ahead of his sentencing, numerous people submitted character letters to the judge.

Glowing letters were submitted by Masterson’s ex-co-starts Ashton Kutcher and Mila Kunis. The swift public backlash led Kutcher and Kunis to release a low-insight, non-apology video on their socials. Kutcher quickly resigned from the anti-child sexual abuse organization, THORN.

The character letters from Masterson’s former co-stars immediately reminded me of how harmful it was when numerous Harvard faculty members wrote letters supporting notorious abuser John Comaroff:

The swiftness with which Comaroff's colleagues initially banded together to defend him might also send a disturbing signal to other powerful people: that if they commit sexual abuse, they can expect their friends and colleagues to jump to their defense. The development is especially distressing because it seems to walk back some of the progress made in the #MeToo movement. That movement showed that even ultra-powerful men like Harvey Weinstein and Matt Lauer (who worked as an NBC News anchor from 1997 to 2017) could be held accountable for sexual misconduct. But it's a lot harder for that to happen when other influential people try to protect those who are accused of sexual abuse.

- Kara Alaimo

at Men Yell at Me captured the damage caused by people like Kutcher - who are not good guys, but not necessarily monsters - perfectly in her essay “A Good Man is Hard to Find.”

For Kutcher, who faces the bulk of the backlash for his support of Masterson, it’s not about what he’s done, exactly. It's about the type of guy he represents. He is not the toxic bro, but he’s friends with him. He supports him. He calls out the nameless, faceless bad guys, but not the ones he’s friends with. Phantoms are easier to fight than buddies, after all. He’s the type of guy who benefits from patriarchy while still being the good guy because he’s not as bad as the rest of them. It’s building a life to look good, without actually doing the radical work of being good. He’s #NotAllMen, the ones who don’t actively do harm, but maybe don’t actively do good, either.

🦉Educational Opportunities

Today is National Physician Suicide Awareness Day.

If you or a colleague are suicidal and need emergency help, call 911 immediately or the National Suicide Prevention Lifeline at 988, or contact the Crisis Text Line by texting HOME to 741741.

In residency, my program director would say, “If you don’t answer your pager, I immediately think you are dead in a call room.”

Physicians have one of the highest suicide rates of any profession.

Like half of all physicians, I’ve lost colleagues to suicide. We often assume our competent peers have it all together, but some of us are simply better at covering up our worries and needs. When anesthesiologists die from drug overdoses, it can be unclear whether their deaths were accidental or intentional.

NPSA offers guides for individuals and organizations to help prevent physician deaths.

The video below is very pre-pandemic, but it captures the profound mental health impacts of our work, and the barriers that keep physicians from seeking support.

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: Kids must be moved from Angola prison; Removing racism from medicine; Mifepristone access

• 📚Recommended Reading: History of Mr. Yuk and Poison Protection

• 🦉Educational Opportunities: Dr. Glaucomenflecken’s 30 Days of US Healthcare

Hey there, Curious Human!

I’m continuing to recover from Covid! I’ve had some pesky neurologic symptoms (new insomnia, wordfinding difficulty) that I hope will resolve completely soon.

I’m excited to share that I have a new paper out this week in Nature Digital Medicine with ethics guidance for including kids in artificial intelligence data sets. Data sets trained with adult data don’t perform well in pediatric cases, so mixing up data from kids and adults willy-nilly can have disastrous consequences. We argue protocols shouldn’t accept kids’ data unless collection meets basic ethical standards.

You can read it for free here: “ACCEPT-AI: Recommendations for the Use of Pediatric Data in Artificial Intelligence and Machine Learning.” ACCEPT-AI stands for considerations based on age, communication, consent/assent, equity, protection of data, and technological considerations.

My friend Vijaytha and I spoke with Adam Hadhazy at Stanford Human-Centered AI group about why we need more guidance for AI researchers hoping to include data about kids.

🗞️ Bioethics in the News

Federal Judge Orders Louisiana to Move Kids Out of Angola Prison

Children in the former death row unit at Angola, one of the nation’s most infamous prisons, have been locked in solitary confinement, shackled while they eat and play, and attacked by guards.

Just reading this ruling made me cry.

These kids have been denied adequate food, and education, and locked up alone for hours and hours - worsening existing mental health conditions and no doubt, creating lasting trauma. The deck was already stacked against these kids and Louisiana’s prison is making it worse.

Dick’s ruling found that authorities at the facility had locked children up in cells for days at a time as a form of punishment, punished detained youth with the use of handcuffs, mace, and denial of family visits, and failed to provide appropriate educational and social services and mental health treatment, according to a press release from the ACLU, which was part of the legal team that filed suit against the placements.

We live in an unbelievably cruel society. Unfortunately, through our “justice” system, we condone violence and abuse against adults and extend the pain to children. The trauma of incarceration is not helping any of these kids but compounding the harm that will follow them the rest of their lives.

The Louisiana Office of Juvenile Justice plans to challenge the ruling.

Pushing to Remove Racism From Medicine

As a medical student, I learned about race-adjusted renal function. Despite asking for more information, it never quite made sense why race would make any difference in these measurements.

As anesthesiology residents, we knew our pulse oximeters could read falsely high on people with darker skin colors. I assumed since we knew about it, that companies like Phillips (who made our monitors and the proprietary algorithms that spit out pulse ox readings) would be updated with more inclusive data. It wasn’t until Covid hit and the problem of pulse oximeters became more widely known that I realized no change ever happened. We still rely on pulse oximetry data collected primarily on white folks.

Health systems and insurers are finally pushing to remove racism from medicine systematically. Race is a social construct, so anytime we use race to deliver care, race is simply a proxy for racism. Despite this being obvious to us now, there are still plenty of race-based algorithms used across medical specialties.

Supreme Court is asked to reject limits on a drug used in the most common method of abortion

In appeals filed Friday, the Biden administration and New York-based Danco Laboratories, the manufacturer of mifepristone, argued that federal judges should not second-guess the Food and Drug Administration’s approval of the drug or the conditions under which it is dispensed.

Mifepristone is unbelievably safe - safer than many over-the-counter medications. Yet, anti-abortion advocates have succeeded in getting case after case through the courts to peel back access to the medication. Recent rulings removed the ability to send the medication to patients by mail and diminished access from 10 to 7 weeks of pregnancy. Mail access is critical since rural patients suffer immense barriers to accessing medical care, especially abortion.

📚 Recommended Reading

Mr. Yuk: The History of Poison’s Most Iconic Symbol

by Erin McCarthy (2014)

Dr. Richard Moriarty, pediatrician and creator of the poison warning Mr. Yuk, passed away this week at 83 years old. In his memory, I’m pleased to share this 2014 essay from Mental Floss on the iconic symbol designed to help kids recognize dangerous poisons at home.

"The skull and crossbones was designed by adults for adults," Moriarty told the Post-Gazette. "Mr. Yuk is actually the first symbol specifically designed for kids." And by kids, too: The final logo was created by fourth grader Wendy Brown from West Virginia as part of a contest sponsored by the Pittsburgh Poison Center. With the addition of the local poison center's phone number in the black band surrounding his face, Mr. Yuk was finished.

🦉Educational Opportunities

No registration is required! Just go straight to YouTube for this on-demand bioethics education.

Dr. Glaucomenflecken’s 30 Days of US Healthcare

Ophthalmologist and comedian William Flanery, AKA Dr. Glaucomenflecken, uses his signature tongue-in-cheek style to teach about the cruelty of American health insurance. Every day in September, Glauc releases a new video skit explaining how health insurance in the US is expensive, low value, and absurd.

Here is a link to his Youtube channel playlist with every skit.

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: Female surgeon outcomes, fracking and rare cancer, ivermectin won’t go away, parental rights in Ohio

• 📚Recommended Reading: The Memory Picture; insurance denials will destroy you

• 🦉Educational Opportunities: AI and the #PaleMaleData problem

Hey there, Curious Human!

Sorry to have left you wondering why you didn’t get a delightful roundup of bioethics news on August 27.

As I mentioned in my last newsletter, Covid is BACK with a vengeance in California! While I’d avoided infection for all these years, I finally caught it this round.

I’ve been too tired to do much else besides sleep and wash my Paxlovid prescription down with electrolyte-sugar water. I’m glad I went with Paxlovid (to both reduce my symptoms now and the risk of long-covid) because even with treatment, this infection has knocked me on my ass. A week in and I finally have enough energy to feel antsy about being in bed so much, and not enough energy to do much more without feeling I need another nap. I’ve stayed isolated from my family, and while that’s getting old, it’s not quite over yet.

Who loves this whole thing? My dog, Sierra. She’s getting the most cuddles ever and never wants isolation to end.

Much as this virus has sucked, I am one of the lucky ones. I have health insurance and a responsive primary care doctor. Within hours of messaging the clinic, I had a video appointment, low co-pay prescriptions, and expert advice. I don’t worry I’ll lose my job over staying home sick. I have the physical space needed to protect my family from exposure. My capable partner has the rest of the house under control.

This is simply not the reality for most Americans.

🗞️ Bioethics in the News

Female surgeons have lower rates of long-term adverse outcomes than their male peers, study finds

In 2017, a study demonstrated that patients treated by women surgeons has improved outcomes 30 days post-op. A follow-up study published this week in JAMA Surgery looked at data from 90 days to one year, suggesting that patients treated by women surgeons have lower rates of adverse postoperative long-term outcomes including death compared to similar patients treated by male surgeons.

The team studied over 1 million patients having 25 elective and emergency surgeries.

Researchers also found that while in general patients had better outcomes with female surgeons, female patients fared far worse than expected and had higher rates of adverse postoperative events within a year when treated by male surgeons.

This study doesn’t say that male surgeons are bad surgeons. But there is something qualitatively different about how women surgeons care for patients compared to men. This may be surgical preparation, patient communication, or something else. Women surgeons frequently face unfavorable working conditions: less likely to receive referrals, work on high-complexity cases, and have less operative time, and are less likely to have leadership positions compared to their male counterparts.

Hospitals should take note and pay much closer attention to what women surgeons are doing well and support the hell out of them.

A Pennsylvania study suggests links between fracking and asthma, lymphoma in children

Children who lived closer to natural gas wells in heavily drilled western Pennsylvania were more likely to develop a relatively rare form of cancer, and nearby residents of all ages had an increased chance of severe asthma reactions

The study was not designed to determine whether drilling directly caused disease but combed through health records and determined how close patients lived to drilling sites.

In the cancer study, researchers found that children who lived within 1 mile of a well had 5-7x the chance of developing lymphoma compared with children who lived 5 miles or greater from a well.

For asthma, the researchers concluded that people with the breathing condition who lived near wells were more likely to have severe reactions while gas was being extracted compared with people who don’t live near wells. However, researchers said they found no consistent association for severe reactions during periods when crews were building, drilling and fracking the well.

The association with a rare pediatric lymphoma is a major finding. Raina Rippel, former director of the Southwest Pennsylvania Environmental Health Project, called the findings the “tip of the toxic iceberg and we are only just beginning to understand what is out there.”

Court revives doctors’ lawsuit saying FDA overstepped its authority with anti-ivermectin campaign 🙄

After I posted about being sick on X (Twitter), I was surprised to have so many comments asking why I wasn’t using ivermectin to treat myself. It’s amazing how long this crappy misinformation lives on and continues to propagate online. Despite significant evidence that ivermectin is ineffective against Covid, proponents remain active and aggressive. Just a few weeks ago, a false rumor circulated that the FDA had approved ivermectin for Covid.

Remember in 2021 when folks were taking horse ivermectin and poisoning themselves? Yeah, me too. That’s when the FDA began clearly and loudly spreading the message that the public should not attempt to take veterinary formulations of ivermectin.

Now, a New Orleans Federal appeals court has revived a lawsuit three physicians brought against the FDA regarding their language regarding ivermectin.

“FDA is not a physician. It has authority to inform, announce, and apprise—but not to endorse, denounce, or advise,” Judge Don Willett wrote for a panel that also included Jennifer Walker Elrod and Edith Brown Clement. “The Doctors have plausibly alleged that FDA’s Posts fell on the wrong side of the line between telling about and telling to.”

Plaintiffs include notorious Covid misinformation doc, Mary Talley Bowden, and ENT surgeon who lost her medical privileges at a Houston Methodist hospital due to spreading dangerous misinformation. In June, the Texas Medical Board filed a complaint against her for unprofessional conduct and violating standards of care.

An Ohio ballot measure seeks to protect abortion access. Opponents’ messaging is on parental rights

A proposed constitutional amendment in Ohio would enshrine abortion rights: “to make and carry out one’s own reproductive decisions.” Eager to flip the script on abortion messaging, anti-abortion groups continue to obfuscate the issue, attempting to distract voters with alternative “risks” related to parental rights and access to gender-affirming care.

Parental rights groups claim to aim to protect children from government interference but really come down to fringe parent groups’ desire to control everything about their children until the moment they turn 18. Mining parental rage for votes is nothing new, and the resurgence of the parental rights movement echoes campaigns from the 1990s.

What anti-abortion and parental rights advocates don’t want voters to understand is that Ohio has some of the most restrictive healthcare access for teenagers. Every year, when I teach adolescent healthcare ethics issues to medical and PA students, I use Ohio as a prime example of a place where it’s very hard to access healthcare if your parents don’t let you.

High-profile stories like Ethan Lindenberger’s journey to get vaccinated despite his parents’ refusal highlight how until a teen turns 18, they have few rights in Ohio. Pregnant teens in Ohio can be denied epidural pain relief if no parent is present to consent (like when the teen has run away from home) or if parents refuse to consent (sometimes as a punishment).

📚 Recommended Reading

The Memory Picture

Being able to prepare for death is a complicated luxury.

by Maggie Levantovskaya

Whoever says Americans don’t talk about death has yet to meet my Soviet family. We’re all too superstitious, afraid to let death dance around our tongues as though saying it will make it happen sooner. We knock on wood. We spit over our shoulders. Sometimes we even wear those little evil eyes around our necks. When death can’t be denied, we’re terrified it will consume us. My family waited months to tell me my great-grandma had died because they didn’t want grief to distract me from my studies. But I am middle-aged now and it is my turn to absorb the pain while tying up loose ends.

I love this personal essay on a woman visiting her Ukrainian grandparents in San Francisco to help make funeral arrangements. It is a story about the conflicts - great and small - that define a family and the ways we deal with past and future grief.

It’s beautiful in the way that pain and grief can be beautiful.

If descriptions of war and combat injuries will be too much for you, go ahead and skip this one. (Or skim very liberally. )

I Set Out to Create a Simple Map for How to Appeal Your Insurance Denial. Instead, I Found a Mind-Boggling Labyrinth.

by Cheryl Clark

I’ve been a health care reporter for more than 40 years. And when I tried to figure out how to appeal insurance denials, I wound up the same way. And I didn’t even try to file an actual appeal.

~Cheryl Clark

If you’ve tried to appeal a denied claim through an insurance company and felt entirely defeated and depleted, you’re not alone. ProPublica’s Cheryl Clark explains why it’s so complicated for everyone.

🦉Educational Opportunities

No registration is required! Just go straight to YouTube for this on-demand bioethics education.

John Oliver's Last Week Tonight on Artificial Intelligence

Artificial intelligence is increasingly becoming part of our lives, from self-driving cars to ChatGPT. John Oliver discusses how AI works, where it might be heading next, and, of course, why it hates the bus. Dr. Joy Buolamwini from the Algorithmic Justice League appears and discusses how the #PaleMaleData problems with AI.

While this segment isn’t specifically about health, AI in the health sector continues to grow and these issues aren’t going to disappear.

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: British nurse convicted; California Covid numbers; Fall RSV vaccines

• 📚Recommended Reading: Medicine robs physicians of their fertility

• 🦉Educational Opportunities: Basics of Public Health Ethics

Hey there, Curious Human!

This week’s roundup touches on one of my interests - illegal behavior by clinicians. I’m not generally into the true crime genre, but I am interested in crimes committed by clinicians using their unique power and access to patients.

Despite efforts in regulation and self-regulation, physicians and nurses can be so protected that few cases are ever exposed to the public. I plan to write more about these cases for you all in the future.

🗞️ Bioethics in the News

British nurse found guilty of murdering seven babies in her care

“In her hands, innocuous substances like air, milk, fluids – or medication like insulin – would become lethal. She perverted her learning and weaponised her craft to inflict harm, grief and death.”

Neonatal nurse Lucy Letby, 33, has been found guilty of murdering seven babies and attempting to kill six others between 2015 and 2016. Prosecutors argued she killed the infants using methods that could be confused with exacerbations of a child’s underlying illness.

When physicians raised the red flag, they were forced to apologize to her.

Police found a trove of handwritten notes while searching Letby’s house during their investigation, including one that read: “I am evil I did this.”

California & Covid

The Omicron Eg.5 variant, or Eris, is becoming the dominant Covid strain in the US, including in California. (To nerd out on recent variants, the CDC has an interactive variant tracker and projector.) In July, the California Department of Public Health redefined an “outbreak,” easing the requirements for employers to meet additional obligations to employees. This means it takes more infections for employers to be required to offer additional support like testing, requiring masks, improving ventilation, and reporting to public health agencies.

Covid cases and hospitalizations are rising in Los Angeles. The SAG/AFTRA strike may keep cases down since Hollywood production is at a standstill, but schools are heading back. We’ll see what happens. We didn't have a summer surge to fuel fall cases.

The recent City of LA Recovery Plan report shows that nearly two-thirds of the city’s $1.3 billion in COVID relief funds went to cops and firefighters, while zero went to building housing. Unfortunately, this was encouraged by the federal administration, rather than thinking more holistically about ways to reduce risk in the most vulnerable populations, like those without secure housing.

Covid outbreaks in four of seven Santa Cruz County nursing homes, show how wide variability of masking and vaccination of residents and staff alike can contribute to infections:

“75% of all nursing home residents in the county are up to date on their COVID-19 vaccinations, but that figure for individual facilities ranges from as low as 54% to as high as 89%…

An even larger disparity exists among nursing home staff, where 66% of all employees are up to date with vaccinations, with a low of 14% in one facility and a high of 100% in another.”

RSV vaccinations to Reduce Hospitalizations and Deaths for Adults and Babies

Each year, roughly 177,000 Americans are hospitalized and 14,000 die from an RSV infection. For those over 65, between 6,000 and 10,000 die per year.

This fall, both older adults and infants can be vaccinated against RSV. While RSV may look like a cold, it can be unpredictable, causing severe lung infections, hospitalizations, and death. For babies who need hospitalization in the first year of life, RSV is a leading cause of death.

Nirsevimab for Babies

Nirsevimab, a long-acting monoclonal antibody, could save lives and prevent thousands of infants from being hospitalized with severe illness.

“The American Academy of Pediatrics recommends that all infants -- and especially those at high risk --receive the new preventive antibody, nirsevimab, to protect against severe disease caused by respiratory syncytial virus (RSV), which is common, highly contagious and sometimes deadly.”

Recommendations include

• All infants younger than 8 months born during or entering their first RSV season.

• Infants and children aged 8 through 19 months who are at increased risk of severe RSV disease and entering their second RSV season.

Arvexy for Grown Ups

This fall, Americans 60 and older adults can be vaccinated against RSV for the first time. GSK’s vaccine Arvexy has already shipped to US pharmacies. Thanks to the Inflation Reduction Act, Medicare Part D patients will pay no out-of-pocket expenses for the shot.

📚 Recommended Reading

Medicine robs physicians of their fertility. Here’s how to fix it

My colleagues Morgan S. Levy, Vineet Arora, and Arghavan Salles write on how medical training interrupts physicians’ prime fertility years, adding additional emotional impacts for those hoping to build a family.

Their team recently published a powerful research letter in JAMA Internal Medicine on the psychosocial burdens of family planning among physicians and medical students.

“Although we know many physicians utilize ART to build their families, our study is the first to show they are six times more likely to report relationship strain and four times more likely to go to therapy to cope with family-building stress. This is consistent with previous evidence showing that infertility patients experience elevated levels of depression and anxiety. Even if you have a clinically “good” outcome, the wounds sustained in this process often turn into permanent scars.”

🦉Educational Opportunities

No registration is required! Just go straight to YouTube for this on-demand bioethics education.

Public Health Ethics. Thinking about bioethics, human rights, justice and moral responsibility

In this video, Greg Martin provides a framework for thinking about public health ethics. “It explores bioethics, human rights, justice and moral responsibility. Ethics is the philosophy of how we should live and can be applied to public health and global health to help make moral and fair decisions. Public health focuses on the health at a population level uses tools like epidemiology and health economics to plan and implement interventions to improve the lives of groups of people. In this video we take a look at deontological and utilitarian ethics developed by Kant and Bentham respectively.”

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: Medical regulators can’t stop bad doctors; Surfer gets Insulin to Maui; police re-evaluate botched facial recognition case

• 📚Recommended Reading: The Ones We Sent Away

• 🦉Educational Opportunities: Pediatric Palliative Oncology Symposium

Hey there, Curious Human!

How are you this find Sunday??? I hope you’re getting some time to relax as the summer comes to a close.

I got a surprise visit this week from two Bioethics colleagues. Patrick Smith and Ryan Antiel are starting a new bioethics fellowship for clinicians at Duke. I’m stoked to see how their program grows.

Summer is a busy time for pediatric surgeries, so I’m looking forward to the hospital schedule going through its seasonal deceleration. Like many kids, mine go back to school this week. Like every year, I don’t know where the summer went.

🗞️ Bioethics in the News

Unstoppable: This Doctor Has Been Investigated at Every Level of Government. How Is He Still Practicing?

Medical boards are supposed to protect the public from unscrupulous physicians. However, the slow and plodding investigations

“But the ability of McGuckin to continue practicing, despite scrutiny from each of these regulators, highlights troubling gaps in the public safety net, ProPublica found. Those charged with identifying and stopping problem physicians are often slow-moving, blind to holes in their oversight and frequently unable — and at times unwilling — to stop doctors from practicing, even in cases of egregious harm or brazen fraud. Punishments are often nominal or easy to avoid, especially for well-resourced doctors like McGuckin.”

Surfer Kai Lenny Cut Through Bureaucracy to Get Critical Medications to Maui Residents

The Maui wildfires killed at least 89 people and ravaged the island. Around 1,000 people remain missing. The most seriously burned patients were transferred to Oahu for medical care. Emergency physicians in mobile clinics continue to serve others.

For people still on Maui, critical medications are running low. With insulin and other medication delivery flights thwarted by bureaucratic barriers, locals turned to using jet skis and boats.

“Something big is happening right now… We’re trying to get insulin flown in from Kona but our flights are being blocked by the Department of Health…a lot of people need their medical needs met…people are suffering… we have no support…”

Thankfully, the message effectively drew attention to the bureaucratic issues worsening the situation and now the flight has been cleared and boats and jet skis will not be stopped.

If you’d like a very surfer-dude version of this story, read this gnarly interview with Beach Grit’s Derek Reilly.

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Detroit police changing facial-recognition policy after pregnant woman says she was wrongly charged

Facial recognition technology wrongly identified a pregnant woman as committing robbery and carjacking. Prosecutors ultimately dismissed the case. The technology examines images from gas station video to produce leads but was followed by “very poor” police work.

📚 Recommended Reading

The Ones We Sent Away

I thought my mother was an only child. I was wrong.

This moving essay reveals the story of a disabled child, now late in her life, sequestered from the bonds of family. In my early 20s, a friend’s mom found out she had a sibling who had been institutionalized. All the siblings were in their late 40s and early 50s, and tried to catch up with their long lost sister.

Parents of disabled children were often told institutionalization was not only preferable to raising their child, but that there were not other viable options. Not only were there no support systems to caring for disabled children, there were anti-support systems - actively making the idea of raising disabled children nearly impossible.

The piece touches on disability rights, bias against people with intellectual and physical disabilities, and the factors perpetuating their exclusion from society. I particularly appreciate the highlighting of the harm done to the rest of the family. Parents sent away their disabled children, having no idea that their lives may have been richer and fuller to have stayed together.

The Ones We Sent Away is long, beautiful, gutting, and worth the read.

🦉Educational Opportunities

Pediatric Palliative Oncology Symposium (PPOS)

• Virtual Symposium

• Thursday, September 14, 2023

• (PDT); 8:00 am - 5:00 pm (CDT); (EDT)

• Cost: Free

This symposium is designed for oncology, palliative care, and psychosocial professionals, but I spoke with one of the organizers and all are welcome.

Featured experts and a panel of bereaved parents will cover a host of challenging subjects, including:

• Resilience in pediatric palliative oncology.

• Update on the development and current status of the palliative care standards.

• Ethical issues and a framework for ethical decision-making in pediatric palliative oncology.

• Psychiatric and mental health needs for pediatric palliative oncology.

• Pediatric palliative care in humanitarian crises.

• Multimodal analgesia in pediatric palliative oncology.

• Grief and bereavement in children.

• Bereaved parent panel.

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: Henrietta Lacks’ suit settled; Postpartum depression pill approved; cyberattacks on hospitals

• 📚Recommended Reading: Grief and poetry; research misconduct & culture

• 🦉Educational Opportunities: Trauma-informed care & neurobiology

Note: Today’s news references self-harm and death.

Hey there, Curious Human!

I’ve been enjoying a rare week of peace and quiet at home. My kids are off at Camp Grandma-Grandpa this week, so my partner and I had a weekend with few responsibilities. Thankfully, I could re-arranged my hospital call schedule, and we took a quick trip down the coast to visit our friend on her gorgeous avocado and citrus ranch. I learned more about avocado and lemon growing in one weekend than I ever really knew in my whole life. And had amazing conversations. And laughed so damn loud and long. And ate a lot of homemade guacamole. 🥑

Yesterday, I facilitated Writing Medicine for a fabulous group of healthcare worker writers. They wrote and shared the most beautiful, lush, deep words. I left with my heart full of hope for a bunch of committed people who want to care for their fellow humans. If you want an excuse to explore your creativity, check out future low-cost writing workshops.

🗞️ Bioethics in the News

How the ‘groundbreaking’ Henrietta Lacks settlement could change research

Thermo Fisher Scientific and Lacks’s family reach a deal over the unethical use of her cells.

Earlier this week, the biotechnology company Thermo Fisher Scientific reached a settlement with the family of Henrietta Lacks, a Black woman who had cells taken from her and used for research without consent more than 70 years ago. The cervical cancer cells, removed during Lacks’s treatment at Johns Hopkins Hospital in Baltimore, Maryland, and known as HeLa cells, were shared widely because of their ability to survive and divide indefinitely in the laboratory — and have led to numerous scientific discoveries. Eventually, they made their way into the hands of companies such as Thermo Fisher in Waltham, Massachusetts, which sells products derived from the cells.

FDA approves first postpartum depression pill in the US

Zuranolone (trade name: Zurzuvae) is the first oral medication approved to treat postpartum depression (PPD). The fast acting 14 days course of once-daily pills can reduce significant barriers to treatment for this serious condition.

Postpartum depression is a major depressive episode occurring later in pregnancy or after birth. PPD is a serious mental health condition impacting up to 1 in every 7 postpartum patients. Data suggests suicide may account for up to 20% of postpartum deaths.

“The most common side effects include drowsiness, dizziness, diarrhea, fatigue, nasopharyngitis (the common cold), and urinary tract infection. Use of Zurzuvae may cause suicidal thoughts and behavior. Zurzuvae may cause fetal harm. Women should use effective contraception while taking, and for one week after taking, Zurzuvae.” - FDA

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Cyberattack causes multiple hospitals to shut emergency rooms and divert ambulances

Prospect Medical Holdings, a private equity healthcare company, endured a system-wide cyberattack, impacting hospitals in California, Connecticut, Pennsylvania, and Rhode Island, and over 160 clinics. While the attack was on the Los Angeles-based company, the cyber network impacted multiple states.

Globally, the healthcare industry continues to be the top target for cyberattacks in the year ending in March, according to IBM's annual report on data breaches. For the 13th straight year, that sector reported the most expensive breaches of any field, averaging $11 million each. That's nearly double the average impact of a breach on the second-largest sector, finance, at $5.9 million each.

The hospitals are unlikely to have networks functioning until next week, leaving clinicians to resort to paper charting.

Data security breaches place patients in serious harm. We are so reliant on digital records that when we switch back to paper, we cannot access patients’ history, medication records, or other relevant information. We can’t click a button to see a patient’s X-rays or laboratory values. There is minimal infrastructure to switch back to a paper system overnight.

When the computers go down, the emergency departments close, diverting patients to other hospitals. This means longer time to emergency care, further increasing harm to patients with serious conditions.

📚 Recommended Reading

Ahead of Time

On poetry and mourning

If you’re looking for more beautiful, long essays to read, I found Kamran Javadizadeh’s moving Yale Review essay through Longreads Top 5 Longreads of the Week. Maybe you’ll find your next read there too.

Marc Tessier-Lavigne’s resignation shows what happens when you don’t pay attention to lab culture

Research ethics is often thought about strictly in terms of personal misconduct, and not often enough in terms of interactions and structures within lab communities that tolerate, and sometimes implicitly promote, corner-cutting and rushing toward publication…

Think about it this way: If approval and rewards at work are directly linked only to results, not process, where do you put your efforts? When only desired data mean success, and when not producing “the right” data makes you a “loser,” the already fierce pressures are intensified.

🦉Educational Opportunities

No registration is required! Just go straight to YouTube for this on-demand bioethics education.

Trauma-Informed Care and Neurobiology of Trauma

Seattle Children’s Dr. Alysha Thompson explains what trauma-informed care is, why it’s important, and how it should fit into our approach to healthcare.

I believe deeply learning and applying trauma-informed practices is the key to healthy, trusting, meaningful relationships with patients. Understanding this framework also empowers us to see the structural factors that traumatize our communities.

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: Mitch McConnell freeze; HIV/AIDS relief at risk; Medicare drug negotiations

• 📚Recommended Reading: The Vanishing Family; No one should be called “doctor”

• 🦉Educational Opportunities: Handmaid’s Tale vs. Texas; Stroke awareness

Hey there, Curious Human!

You have probably noticed my weekly roundup of bioethics news, reading, and education is especially late this week. I am giving myself grace for that, because y’all I do not have it all together all the time. In my commitment to avoid email on vacation, I returned to work with a mountain tasks and messages, and I had a quick trip to Anaheim for a conference, and phew! It took it out of me.

Much as last week kept me busy, I enjoyed attending the last* American Association for Clinical Chemistry (AACC) annual meeting in Anaheim, CA. The organization renamed itself Association for Diagnostics & Laboratory Medicine (ADLM) this year.

When at a chemistry conference, obviously I wore my periodic table pants from Dr. Raven Baxter’s Smarty Party Clothing Company. I love wearing these pants because all the science nerds want to know where to get a pair. If you’re looking for a gift for science lovers, check it out.

OK - on to the news - one week later than usual… ❤️

🗞️ Bioethics in the News

Mitch McConnell Suffers an Episode at the Capitol, Freezing Midsentence

The 81-year-old Senate Republican leader, who had a serious fall earlier this year, was temporarily unable to speak during a news conference, raising questions about his health and future.

McConnell suffered a severe head injury and broken rib earlier in the year. As a doctor, watching these 20 agonizing seconds made me want to call a stroke code through the computer.

Abortion fight clouds AIDS-fighting program’s future

Republicans rejected a Democratic bid to re-up PEPFAR via the annual defense policy bill.

The PEPFAR (President’s Emergency Plan for AIDS Relief) program fights AIDS and HIV in more than 50 developing countries in Africa, Asia, Latin America, and Europe.

House Republicans confirmed this week that they will not reauthorize any of the $7.5 billion program. Initially formed by George W. Bush, the program will expire in the fall. Republicans claim PEPFAR funds programs promoting abortion access.

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Drugmakers brace for list of first 10 drugs for US price negotiations

The government will soon announce the first 10 medications that will be subject to price negotiations with Medicare under a new law. Drugmakers are fighting the measure in court.

Americans pay more for prescription medications than any other country. It’s bananas, but the US has never allowed Medicare to negotiate any drug prices, no matter how expensive.

President Biden’s Inflation Reduction Act (IRA), signed into law last year, finally allows Medicare to negotiate prices for some of its most costly drugs. The minimum cut on the list price would be 25%. This will hopefully save $25 billion per year on drug prices by 2031.

Numerous drug makers are suing to prevent the law from taking effect.

📚 Recommended Reading

The Vanishing Family

They all have a 50-50 chance of inheriting a cruel genetic mutation — which means disappearing into dementia in middle age. This is the story of what it’s like to live with those odds.

This is genetic, she thought.

This is inherited.

And then, finally: We all might have it.

If you’ve ever wondered what it would be like to face life-altering genetic information, I highly recommend The Vanishing Family by Robert Kolker. In a large family, the youngest child watches her mother, and then several of her adult siblings fade away into a unique form of dementia.

No one — M.D. or otherwise — should use the honorific ‘doctor’ with patients

Stephanie W. Edmonds, Alden A. Bush, and Ginny L. Ryan (with M.D., D.N.P., Ph.D., and R.N. degrees) write in STAT First Opinion that it’s time for a reality check out physicians monopolizing the honorific “doctor” and that it’s time to get rid of it altogether.

🦉Educational Opportunities

Quiz: Is this scenario a plot point from The Handmaid’s Tale or something currently happening in Texas?

I made my husband take this quiz comparing Margaret Atwood’s classic book, The Handmaid’s Tale, with Texas's current lack of autonomy. He demonstrated how much he’s been paying attention to healthcare politics.

Saying it was “fun” is not right, but it is an interesting pop-culture way to contextualize the dire straights women and trans folks face.

If you miss any answers, I hope you’ll read up on what’s happening in Texas.

Act FAST for Stroke Survival

From the CDC:

“Knowing the symptoms of a stroke and acting quickly could mean the difference between life and disability or death. If you delay getting help, the risk of permanent damage or death increases greatly.

Even if the symptoms don’t last long, they may still be a sign of stroke. Call 911 right away if you or someone you know has any of these symptoms:

• Sudden numbness or weakness in the face, arm, or leg — especially on one side of the body

• Sudden confusion, trouble speaking, or understanding speech

• Sudden problems seeing in one eye or both eyes

• Sudden dizziness, loss of balance or coordination, or trouble walking

• Sudden severe headache with no known cause

Other danger signs that may occur include double vision, drowsiness, and nausea or vomiting. Stroke strikes fast. Responding quickly when you notice any of these symptoms is key.”

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week! (*But really you’ll get the next Curious Bioethics tomorrow! I’m getting back on track!)

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: Texas’ increasing infant mortality

• 📚Recommended Reading: “Finding a New Mantra” for physician mental health

• 🦉Educational Opportunities: Disability and Ableism; Bioethics courses in Denver

Hey there, Curious Human!

I’ve been on a glorious vacation this week in Colorado, breathing in the mountain air and doing all the outdoor things with my family and friends. I've wanted to learn to fly fish for a long time and got this chance this week. I love how it’s meditative and intellectual. I see how anglers can spend hours and hours on the water.

It’s opening weekend for Greta Gerwig’s Barbie and Christopher Nolan’s Oppenheimer - dubbed “Barbenheimer Weekend.” I haven’t seen either yet. As a kid, I was never into Barbies, and I still don’t generally like pink, but I will definitely see the Barbie Movie. It sounds like feminist, campy satire. (There’s a fun Barbie selfie generator if you’re interested in repping one of Barbie’s many jobs)

I will likely watch Oppenheimer, but I’ll need to be in the right headspace for three heavy hours of the atomic bomb and its tragic consequences. I used to love dark, moody films, but years of doctoring have left me more reticent about how much emotional energy I can expend on something that is supposed to be entertaining.

For now, I’m enjoying my last few days of vacation away from emails and pagers.

🗞️ Bioethics in the News

Two stories from Texas:

Nearly two years after Texas’ six-week abortion ban, more infants are dying

Hearings for Zurawski vs. State of Texas - a case challenging Texas abortion law

Infant deaths in Texas have risen by over 20% since Texas implemented severe abortion restrictions starting at six weeks (before most people know they are pregnant).

This is not a surprise.

Pregnant patients facing life-threatening complications for themselves and their fetuses no longer have access to abortion. Like the Dorbert family in Florida, whose son was prenatally diagnosed with a severe congenital condition and died shortly after birth, pregnant patients in Texas are forced to deliver their babies to die.

Jill Filipovic

Texas Banned Abortion. More Babies Died.

It’s a sad but predictable outcome: The state of Texas criminalized abortion in 2021, before the Supreme Court issued its ruling in Dobbs, and an infant mortality rate that had been dropping for nearly a decade spiked up. Nearly a decade’s worth of progress was reversed. Thousands of babies didn’t survive…

Read more

3 years ago · 30 likes · 2 comments · Jill Filipovic

In March, the Center for Reproductive Rights filed a lawsuit on behalf of two physicians and 12 patients against the Texas abortion restrictions. Victims and physicians described their terrible bind in two days of hearings this week. In Texas, physicians who provide abortions face up to life in prison and a $100,000 fine. This forces physicians to be complicit in denying rational, evidence-based care to patients.

Samantha Casiano, whose fetus was diagnosed with anencephaly, testified that her doctor told her, “You have no options. You will have to go through with your pregnancy.”

Amanda Zurawski, the lead plaintiff in the lawsuit, was forced to develop sepsis before receiving a life-saving abortion. She wanted Texas senators Cruz and Cornyn to know, “I nearly died on their watch, and furthermore, as a result of what happened to me, I may have been robbed of the opportunity to have children in the future.”

Texas’ maternal mortality increased over the past two decades, from 10.3 deaths per 100,000 live births in 1999 to 21.9 in 2019. More recent data is expected to be worse.

Check out Curious Bioethics from March for a refresher on America’s abysmal maternal mortality crisis.

Opill, Over-the-Counter contraception approved

Progesterone-based “mini-pills” have been available since 1973, but recently, the pill was approved for over-the-counter access. This removes a significant barrier to contraception access for women and teenagers.

Progestin-only birth control generally creates thick cervical mucus, making it difficult for sperm to enter the uterus and fertilize an egg. Forty percent of women taking “mini-pills” will continue to ovulate. In some cases, progestin stops ovulation.

One of the challenges of progression-only birth control is it requires the pill to be taken at the same time every day to be effective. ACOG states: “If you have trouble remembering pills, use an alarm or a smartphone app to remind you. Do not skip pills for any reason. Missing pills or taking pills at different times each day makes the birth control less effective.”

Big questions remain about Opill. How much will it cost? Will insurance cover it? If the medication is too expensive, the people most in need cannot afford it. I anticipate that these pills will be locked up in drug stores, requiring shoppers to request access.

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📚 Recommended Reading

Finding A New Mantra

My incredibly talented friend and fellow storyteller, Dr. Shireen Heidari, published an excellent essay last year on reconning with her own mental health in the face of worsening work-related anxiety and depression.

🦉Educational Opportunities

No registration is required! Just go straight to YouTube for this on-demand bioethics education.

Disability and Ableism with Keah Brown

“Just Take A Class” at the University of Colorado ($$$)

I usually focus on free, open-access education. Still, if you’re looking for more in-depth bioethics education, the University of Colorado’s Center for Bioethics and Humanities offers two classes this fall that may be of interest: Foundations of Health Humanities (3 credit hours) and Introduction to Public Health Ethics (3 credit hours with my friend Daniel Goldberg, J.D., Ph.D.). These can be applied towards a bioethics certificate or take them a la carte.
                     

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: Body reattachment, Nebraska abortion case, Measles warning

• 📚Recommended Reading: Famous Abortionist from Old New York: Madame Restell

• 🦉Educational Opportunities: The Comstock Act Explained

Hey there, Curious Human!

I had a bit of a rough week clinically, so please forgive my day late delivery of Curious Bioethics. This week's professional highlight included telling a story live at Stanford’s Story Rounds. I told a story of sexual harassment and the magic that can follow when individuals band together to demand organizational courage.

I’m thrilled to be heading out on a week of much-needed vacation. I turned off my pager and the hospital’s HIPAA texting app. As with many American’s, I have hard time separating myself from work, so I’m looking forward to being in the mountains and a little more off the grid.

🗞️ Bioethics in the News

Body reattachment surgery in Israel

Suleiman Hassan, a 12-year-old Palestinian from the West Bank, suffered what is known as an internal decapitation, with his skull detached from the top vertebrae of his spine – officially known as a bilateral atlanto occipital joint dislocation.

Surgeons at the Hadassah Medical Center were able to repair his orthopedic injuries in June and announced the surgery last week. I have to assume there were no severe injuries to any major blood vessels or nerves. This is a very rare situation, and this boy is incredibly lucky.

This case highlights the serious impact of access to high-quality hospital services. Patients seriously injured in rural areas, far from hospital services, are less likely to have a good outcome.

Nebraska Mom Pleads Guilty to Giving Abortion Pills to Her Teen Daughter

Jessica Burgess faced eight years in prison for helping her then 17-year-old get abortion pills. A plea deal brought it down to two.

When Celeste Burgess was 17, someone told the police she had a stillbirth and buried the remains. The police obtained a warrant for her Facebook messages between her and her mother. These messages revealed Celeste’s mother, Jessica Burgess, had discussed ending the pregnancy with pills.

Celeste was charged as an adult and plead guilty in May, facing a two-year prison sentence. Her mom, Jessica, also faces two years in prison.

To learn more about how tech companies may expose patient data, check out “How US police use digital data to prosecute abortions” by Runa Sandvik.

In this case, it was Facebook that revealed Celeste’s abortion, but it’s usually healthcare workers and friends who turn in people for having abortions. You can read more about that data below:

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London Measles Outbreak Prediction

London could see tens of thousands of measles cases due to low levels of vaccination, the UK Health Security Agency (UKHSA) has warned.

Mathematical calculations suggest an outbreak could affect between 40,000 and 160,000 people.

Levels of measles, mumps and rubella (MMR) vaccinations in the UK are at their lowest level in a decade, with around one in ten children not protected by the time they start primary school.

Data below show UK and Wales with three years with significant measles outbreaks (2012: 4,211, 2013: 6,193, 2018: 2,557). While the 2012-2013 outbreak was not limited to London, the recent outbreaks show that many cases occur in London. 67 million people live in the UK and nearly 9 million in London.

For comparison, the US had its worst measles outbreak in 2019, with 1274 cases in the country.

Measles vaccination in the US remains high-ish (90.8%), similar to the UK. Small communities that avoid vaccination can fuel larger outbreaks. In 2019, Ultra-Orthodox Jewish communities were linked to an outbreak in Rockland County, NY. Travel may expose folks to measles in unexpected places, such as at Disneyland in 2015, which spread to other US states and Mexico. Last March, the CDC warned that nearly 20,000 may have been exposed to measles at a religious event in Kentucky.

📚 Recommended Reading

Madame Restell

The Life, Death, and Resurrection of Old New York’s Most Fabulous, Fearless, and Infamous Abortionist

Acting as a businesswoman, an abortion doctor, and reproductive justice advocate, Madame Restell provided contraceptive pills, abortion pills, and surgical abortions in New York in the 1800s. Born Ann Trow Lohman in England, she was married with a child when she and her husband moved to New York, hoping to build a better life. Her husband died in New York, and Ann needed to find a way to make a living and support her daughter. She worked as a seamstress for low pay and poor working conditions. After meeting her second husband, Ann met Dr. William Evans. He was not a formally trained physician, but in the years before medical regulation, he fashioned himself into a doctor to sell herbal pills and powders.

Ann decided to sell her own pills and, ultimately pills to end pregnancies. She fashioned herself Madame Restell, claiming to have been trained as a physician in France (where sexual mores were more liberal). She ran effective advertisements in local newspapers that drove business.

In addition to cataloging an enterprising woman making her way in a difficult city, Wright shows how difficult it was to be a woman in the 1800s. Women working in service as maids could easily be coerced into sex or simply raped and quickly abandoned by their employers. Work for women was extremely limited and competitive. Women with children faced the outsized task of working and figuring out how to keep them safe while unsupervised. Toddlers were often left to care for babies, or children were drugged with laudanum or other sedatives so parents could work to afford the family’s food.

I was struck by how few reports of Restell’s patients being harmed could be found. She had many repeat customers for her pills and surgical abortions. As opposed to many other abortions reported at the time (with high incidence mortality), Restell kept surgical patients in her care for days after the procedure to ensure they were fed and resting. Her services were incredibly popular, and the fees catapulted her out of poverty to become a wealthy (if not respected) woman of the time.

Restell’s ultimate downfall came from notorious anti-vice crusader Anthony Comstock. He saw contraception and abortion as equally reprehensible and made it his mission to go after people like Restell. In a post-Dobbs American, the Comstock Act first passed in 1873, has resurged in importance.

For shorter summaries of Restell’s life, check out these resources from the New York Historical Society and Smithsonian Magazine:

Life Story: Ann Trow Lohman, a.k.a. Madame Restell (1812 - 1878), Notorious Abortionist: The story of the most famous abortionist in New York history.

Madame Restell: The Abortionist of Fifth Avenue - Without benefit of medical training, Madame Restell spent 40 years as a “female physician”

🦉Educational Opportunities

No registration is required! Just go straight to YouTube for this on-demand bioethics education.

The Comstock Act with Boom! Lawyered

Conservative anti-abortion activists attempt to resurrect the Comstock Act to ban mailing abortion pills. In this video, Imani Gandy is joined by special guest and colleague Garnet Henderson, reporter and Comstock Act expert, to explain how we got here and where we're going.

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: Family policing and prescribed opioids, Psychedelic harm reduction, Lead pipes

• 📚Recommended Reading: Cloud Cuckoo Land

• 🦉Educational Opportunities: The Retrievals

Hey there, Curious Human!

July is in full swing - though it’s been chillier than expected in the Bay Area. Thanks to the rain this winter, our plum tree had a banner year - exploding ripe fruit over the course of a few days. The tree is suddenly feeding every squirrel and bird in town, and there is still plenty to share with our neighbors and friends. Below is a photo of what we picked this afternoon. In the morning, my partner picked nearly as many and delivered baskets full to a bunch of locals.

🗞️ Bioethics in the News

They Followed Doctors’ Orders. Then Their Children Were Taken Away

Federal law has put thousands of women on anti-addiction medications into an impossible bind: Give up your treatment or risk losing your baby.

This week’s story about family policing, the opioid crisis, and substance use treatment highlights the profound biases against women, people who use opioids, and people who lack resources to defend their families from governmental interference.

To prevent miscarriage, premature birth, and relapse, pregnant patients with opioid dependence can take a doctor-prescribed synthetic opioid, like buprenorphine.

But federal law requires reporting babies “affected by” substances to child protective services even if the medications are prescribed. Child-welfare authorities may intensely scrutinize patients taking buprenorphine and remove the children from the parents’ custody.

We also found women who were reported after taking antidepressants, anxiety and ADHD medications and even over-the-counter cold medicine during pregnancies. Some women were reported after testing positive for the fentanyl in their epidurals.

(I remember being high as a kite from the fentanyl in my epidural during my second birth.)

A particularly telling section:

In one 2019 case, a West Virginia judge allowed the state to cut off payment for a mother’s Suboxone, prompting her to relapse, and then terminated her parental rights. “I always have a problem with people being on Suboxone to begin with, and that’s my position,” the judge said during one hearing.

So because the judge doesn’t believe in evidence-based care for people in recovery, he sabotaged a parent and then terminated her legal right to be a parent.

It’s unacceptable that patients receiving appropriate medical care to keep them safe are being punished. So long as our society and the law treat people in recovery as unworthy of respect and a future - we will never see an end to the scourge of substance use disorders.

Psychedelic Harm Reduction

Meet the Psychedelic Boom’s First Responders: With more tripping will come more psychic terror. A new movement of volunteers will guide you through your brain melt.

Chris Colin explores the resurgent, more open access to psychedelics and the vast majority of people having trips in unsupported environments.

Passing thoughts became black holes clawing him to untold depths, playing and replaying in a mad, warping whirlpool. Tricks that would have typically changed the channel—classical music, a splash of water to the face, waiting it out, crying it out—had no effect. Worst of all, he had no help. This wasn't a guided journey, after all, just a man alone in his house, losing his mind. Who do you call in such a state? Who could possibly understand this other­worldly misery with its indescribable new dimensions, its billowing revelations, its slithering dream logic?

Much as we need to embrace harm reduction related to the opioid crisis, we need in many other spheres. Psychedelics aren’t going anywhere. There’s a new crop of volunteers supporting people on trips to ensure they can get through their experience rather than being stuck in a terrifying loop.

*On a side note, please know that while psilocybin reporting these days often downplay the risks, there are serious risks. In particular, people at risk of psychosis or experiencing a medical illness. This essay addresses these issues briefly. I have been very concerned regarding the number of friends who are physicians or therapists who are entirely unaware of the risk related to psychosis. Ketamine, recently subjected to rapid commercialization, raises similar concerns.

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Leaving Behind Lead Pipes

Some cities are digging up water mains and leaving lead pipe in the ground

Lead in the water is bad news. But getting rid of lead pipes is expensive, and some cities have avoided removing all of the lead pipes. Ironically, digging up pipes twice costs more in the long run. Not to mention the human costs of lead exposure.

Around the country, utilities have been leaving lead pipe in the ground even when it is easiest to remove during water main work. Worse, they have been removing sections, disturbing the pipe and leaving the rest, which can spike lead levels, causing harm that will last a lifetime, an investigation by The Associated Press has found…

The sections that remain can poison tap water until they’re removed. The practice is also more expensive in the long run, since crews presumably will have to return someday.

📚 Recommended Reading

Cloud Cuckoo Land

I read Anthony Doerr’s Cloud Cuckoo Land a while ago and can’t stop thinking about it. It’s a book that is so beautiful, the characters so magnificent that my brain returns to the story again and again.

The book takes place over almost 600 years - with Doerr slowly revealing the connections between the seemingly disparate characters. The book offers a wonderful lens to view the human condition and reflect on how stories sustain us.

I am not interested in exiting Earth’s atmosphere, but I’ve been interested in astro-ethics for some time. I often reflect on characters on an interstellar mission, including a young girl named Konstance. Konstance’s father boards a ship to leave Earth as a teenager, eager to escape human-made climate catastrophe.

The book inspired me to think about what it would be like to be a person leaving Earth for an interstellar mission, knowing they’d never return. Doerr explores how passengers were selected for skill sets and what the inside of the ship would need to sustain humanity. It made me recall the American Society of Bioethics and Humanities conference years ago in Houston, where I learned about and discussed the ethics of long-distance space travel with astronauts.

I hope you enjoy the book (if you haven’t read it already). I’d love to hear if it' sparks any of your ethical thinking.

🦉Educational Opportunities

No registration is required! Just go straight to your favorite podcast app for this on-demand bioethics education.

The Retrievals

IVF, Women’s Pain & Stolen Fentanyl

This podcast is essential. Women are constantly gaslit in medical spaces- our pain is often ignored or minimized. Our complaints are blamed on fatness, anxiety, and depression. If you’ve ever wished for irritable proof that ignoring women is harmful - to patients and organizations - look no further.

I’m reflecting on every episode. Episodes 1 & 2 are available now.

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa

• 🗞️Bioethics News: SCOTUS abandons students, LGBTQ+ people, and kills affirmative action

• 📚Recommended Reading: Bootstrapped book, vaccines and disability cultural competence

• 🦉Educational Opportunities: Sawbones teaches about Xylazine

Hey there, Curious Human!

Happy July… I’m in absolute denial that the year is more than half over.

🗞️ Bioethics in the News

SCOTUS Decisions regarding Student Debt, Affirmative Action, and LGBTQ+ access to business

Three major decisions announced on Friday mean a lot for bioethics:

1. Debt Forgiveness in Biden v. Nebraska

Biden v Nebraska: SCOTUS voted along partisan lines 6 - 3 to stop more than 40 million borrowers from receiving loan forgiveness. This attacked the Post-9/11 Heroes Act which gives the secretary of the Department of Education authority to “waive or modify any statutory or regulatory provision applicable to the student financial assistance programs ... as the Secretary deems necessary in connection with a war or other military operation or national emergency.”

Why it matters: Student debt is a major source of ongoing inequality in America. Excessive student debt holds students back from accruing wealth and stifles social mobility. Who will suffer most? The people who already have the least wealth and influence.

Four years after graduation, the average Black college graduate owes $52,726, compared to $28,006 for the average white college graduate. With federal interest rates between 2.75% and 5.3%, the average white household will be able to deduct their complete interest payment each year while the average Black household will not. The tax system prevents low-wealth, high-income households from ever catching up with high-wealth households. - Brookings

This decision will reinforce wealth and racial divides in student debt, including medical student debt.

2. SCOTUS ends Affirmative Action in Higher Ed

Affirmative Action was a tool to combat long standing race-based inequality. Because the playing filed has been excruciating unfair to some populations, affirming action provided a mechanism to right these historical (and ongoing) wrongs. SCOTUS chose to overturn affirmative action (in most of higher ed spaces). However, they left a major form of affirmative action intact: legacy admissions (I’ll call it fancy affirmative action) - which overtly favors those who already have power and status.

We already know what will happen at universities without affirmative action in place - diversity will plummet. California’s 1996 Proposition 209, banned affirmative action at public universities in the state. Educators say “they haven't been able to meet their diversity and equity goals — despite more than a half billion dollars spent on outreach and alternative admissions standards.”

Conspicuously, U.S. military academies have permission to continue to utilize affirmative action practices. The government specifically lobbied to have an exception so the military could continue to recruit and prioritize diverse soldiers. (see Justice Jackson’s quote above)

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3. 303 Creative v. Elenis

SCOTUS closes PRIDE month by promoting LGBTQ+ discrimination

The court ruled 6-3 for the owner of 303 Creative (designer Lorie Smith), saying she can refuse to design websites for same-sex weddings despite a Colorado law that bars discrimination based on sexual orientation, race, gender and other characteristics.

The court said forcing her to create the websites would violate her free speech rights under the Constitution’s First Amendment.

Beyond its terrible implications for the LGBTQ community, this is a case that the Court should never have agreed to hear. The case is not grounded in any actual events - Smith didn’t have standing. Lorie Smith has not been asked to make a site for any same sex couples. (The story behind a falsified request are quite bizarre.)

Pride month ended with the Supreme Court writing a blank check to discriminate against LGBTQ folks, even though the case was garbage.

📚 Recommended Reading

Bootstrapped

Liberating Ourselves from the American Dream

Alissa Quart is the executive director of the Economic Hardship Reporting Project and author of the book Bootstrapped: Liberating Ourselves from the American Dream.

Quart uses the pandemic to invite re-examination of our national mythology around going it alone and being “self-made.” Quart examines the role of popular fiction and commentary on American go-it-alone ideology through the work of popular writers like Emerson and Thoreau, Ayn Rand, and Laura Ingalls Wilder.

I had not thought of Little House on the Prairie as novels that shaped American politics. However, in the chapter “Little House of Propaganda” I can see the connection. I wasn’t familiar with the author’s daughter Rose Wilder Lane, and her daughter’s role in rewriting the books (Ingalls Wilder’s first draft was called Pioneer Girl). Nor did I realize that Wilder Lane is one of the most influential advocates of the American libertarian movement. She was a crusader for a particular brand of individualism that’s been sold to Americans again and again.

Throughout the book, Quart shows how dependency on others isn’t a bad thing, and that mutualism and interdependence are necessary for surviving and thriving.

In an interview, Quart says “And I think we need to remember it’s still an absurdity. Nobody is able to do this alone. You need infrastructure. You need a tax base. You need parents. You need schools. And this is the message that I’m hoping will get through from this book. And it’s also a message that has to do with the pandemic. It’s things we learned during the pandemic about relying on each other and surviving with the help of others.”

Vaccines and Disability Narratives

Finding more constructive ways forward in the debate over vaccines with increased disability cultural competence by Dr Carolin Ahlvik-Harju

“What if parents to young children would be allowed to circulate their worries at the doctor’s office and have someone say that autism might be a challenge, but also a gift? What if more research funding could go into creating the necessary support for autistic families, instead of merely to finding out why they have autism in the first place? What if representants for the media would highlight a more complex and optimistic view of (people with) autism when reporting on the safety of vaccines? What if the presence of the 1 in 68 people (or more) that are diagnosed with autism would be a reminder of life’s giftedness, rather than a sign of catastrophe? What if research about vaccine attitudes, public health and bioethics would extend its basic premises, principles and views on human being so that they would actively work against polarisation and discrimination of people with disabilities?…

“Because when both research and the wider discourse are limited to whether there is a link between the MMR vaccine and autism, there is an implicit ableist message there that autism is not wanted. People with autism are not wanted.”

Today, this essay is available for free (no paywall) in BMJ Medical Humanities.

🦉Educational Opportunities

No registration required! Just go straight to your favorite podcast app for this on-demand bioethics education.

Sawbones: Xylazine Poisoning

Sawbones: A Marital Tour of Misguided Medicine is one of my favorite medical history podcasts. While it usually covers medical history, this recent episode covers Xylazine, an animal tranquilizer, and the specific dangers is causes to human beings.

Have you heard of Xylazine (AKA “tranq”) contaminating the opioid supply?

I hadn’t.

Xylazine is an alpha-2 adrenergic receptor agonist that was trialed in humans, but found to cause serious undesirable side effects. Because it is mixed into opioids like fentanyl, the drugs work together to cause more severe symptoms. Symptoms can include:

• sedation

• difficulty breathing

• dangerously low blood pressure

• slowed heart rate

• wounds that can become infected (xylazine causes skin ulcers at injection sites)

• severe withdrawal symptoms

• death

However, because xylazine is not an opioid, naloxone (Narcan) can’t reverse the effects.

Since Dr. Sydnee McElroy practices in West Virginia, we get to learn a little more about the clinic where she works and how they respond to patients they suspect of Xylazine poisoning. I appreciate how Dr. McElroy highlights the primacy of treating patients who use opioids as human beings, worthy of care and attention. Their lives are not worth less because of using substances.

According the Drug Enforcement Agency (DEA), xylazine and fentanyl mixtures have been seized in 48 of 50 States. In 2022, approximately 23% of fentanyl powder and 7% of fentanyl pills seized by the DEA contained xylazine.

That’s it!

As always, thanks for being curious!

Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!

See you next week!

Be Well & Be Curious,

Alyssa