Pediatric Bioethics

Why the Dutch Keep Pediatric Euthanasia Illegal

Eduard Verhagen

Pediatric euthanasia in The Netherlands has a unique legal status - it is illegal, openly practiced, and well-regulated. The most surprising part isn't the law that enabled this — it's what happened after.

Associations of Physician Perspectives, Personal Choices, and Counseling for Severe Congenital Heart Defects.

Woo JL, et al.

OBJECTIVE: To assess whether physicians' perspectives of outcomes or personal choices are associated with prenatal counseling for termination of pregnancy (TOP) or perinatal hospice for severe congenital heart defects (CHDs). METHOD:…

Variation in the extent to which patient information leaflets describe potential benefits and harms of trial interventions: a commentary.

Howick J, et al.

Clinical trial participants must understand the possible risks and benefits of trial interventions before providing their informed consent to participate. The aim of this commentary is twofold: to summarize the discrepancies in the extent…

Pediatric Gender Medicine—Reply

Moti Gorin, Jilles Smids

Third, emerging evidence suggests that modulating glycosylation pathways could offer a novel therapeutic strategy for asthma management.Xie et al 5 proposed that targeting glycan recognition receptors, such as sialic acid-binding…

The Philosophical Fiction of Substituted Judgment.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Toward Evidence-Based and Ethical Pediatric Gender Medicine

Moti Gorin, Jilles Smids

This Viewpoint discusses the need for clinicians to conduct thorough research on the risks and benefits of gender-affirming care so that lawmakers and judges do not make decisions on such care without

IVF, Culture Wars, and "Joy"

How did in vitro fertilization (IVF) transform itself in the public mind from a morally disreputable practice to an essential medical service? In the early days of IVF research, it was stridently condemned by religious leaders, famous scien

Research in Gender Medicine Sucks

Since 2017, the number of patients diagnosed with gender dysphoria (GD) nearly tripled, the average age of patients receiving this diagnosis fell from 31 to 26, and the diagnosis of GD has become much more common among women than men.

Imane Khalif and Eero Mäntyranta

The controversy over Algerian boxer Imane Khalif couldn’t help but remind me of the great Finnish Nordic skier, Eero Mäntyranta. Mäntyranta dominated the sport. Between 1960 and 1972, he won 7 medals and 3 golds. He was so extraordinary th

Whistleblowing: A Special Sort of Hell

Dear reader, I have become sort of obsessed with Carl Elliott’s new book. In it, he writes of his own experiences as a medical whistleblower about perceived research misconduct at the University of Minnesota. That part of the book is deeply

Is Comstock Coming for your Condoms?

When I was fifteen, there were only two options for buying condoms. They were available from vending machines in the men’s rooms of some seedy restaurants. There, they came in fruit flavors, had names like “French tickler,” and promised “to

Shortcomings of Citizen Science

Amy Dockser Marcus argues that the way we do science has changed. As evidence, she tells the story of how parents of children with a rare disease - Neimann-Pick Type C, or NPC – became partners with drug companies and NIH scientists in desi

Gaza and the complexity and context of suffering.

Zivot JB, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

The slow, necessary growth of pediatric palliative care.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Abortion as a human right’

Controversy over the legality of abortion is heated throughout the world. The United States is one of the few countries in the world that has restricted abortion rights recently. In this article, I will review the controversy over abortion…

How to move forward in shared decision-making in pediatric palliative care

Chantal Y. Joren, et al.

Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the…

How Will Medicare Negotiate Drug Prices, And What Impact Will It Have?

Marc A. Rodwin

A new law allowing Medicare to negotiate drug prices makes Medicare similar to other countries' national health authorities and may help control drug prices in the US. However, some features of the law allow manufacturers to retain…

The Dutch model for regulating paediatric euthanasia

Eduard Verhagen

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Texas Abortion Decision

Sorry for the glitch on my last post. I'm working on it. My thoughts on the Texas Supreme Court decision can be read here:https://www.thehastingscenter.org/texas-supreme-court-offers-roadmap-for-legal-abortion/The decision is trying to in

Suppressing free speech as a form of free speech?

Censorship is on the rise across America. With censorship, questions always arise about who gets censored, who gets to do the censoring, and by what standards. Questions also arise about the goals of censorship since we know that censoring

I dare you: Read these two books together.

A few weeks ago, I wrote about turmoil in pediatric gender medicine. Nobody, not even leaders of the field, can explain the rapid rise in the prevalence of gender dysphoria. There are plenty of different theories about why GD is occurring

Gender-affirming treatment: life-saver or child-abuse

By any account, the field of pediatric gender medicine is a mess. Even experts in the field cannot agree about what is going on, where the field is going, or where it ought to go. In politics, the controversies are even worse. At least 20

Who should debate RFK Jr?

Robert F. Kennedy Jr. thinks vaccines kill children and cause brain damage. He thinks they continue to be given only because of a massive conspiracy between Big Pharma, scientists, and governments throughout the world. He ignores the benefi

Drama about Duchenne at the FDA

The recent meeting of an FDA Advisory Committee charged with making a recommendation about an innovative gene therapy for the treatment of Duchenne Muscular Dystrophy was surprisingly dramatic. It was, in fact, so highly scripted that coul

Is Pregnancy A Disease?

Philosopher Dan Brudney explored the implications the simple statement that pregnancy is not a disease. The paper is particularly relevant because similar arguments crop up in the current controversy about abortion pills. Brudney was fight

Trans politics brings down PM Sturgeon

Scottish Prime Minister Nicola Sturgeon says that she resigned because she was exhausted by the pandemic. Others think that the battle over gender politics contributed to her decision to step down. But the pandemic is over. And the batt

Understanding the Clinical Utility of Genome Sequencing in Critically Ill Newborns

Luca Brunelli, Robin Z. Hayeems

Diagnostic genome sequencing (GS) in newborns may have many benefits. More accurate diagnosis could spur the development of innovative genomic therapies. A precise diagnosis could help doctors and parents anticipate clinical problems and…

Challenges in accelerated approvals for gene therapies

Rafael Escandon

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Pediatric palliative care across continents: Communication and shared-decision-making

Chantal Y. Joren, et al.

Despite the significant growth and development of pediatric palliative care worldwide, significant challenges remain. One of those challenges is shared decision-making, by which parents, families and professionals all work together to…

Reply to Letter about whole genome sequencing in newborns

Annie Janvier, Keith J. Barrington

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

The Dilemmas of Artificial Wombs: Conventional Ethics and Science Fiction.

Janvier A

Click to increase image sizeClick to decrease image sizeThis article refers to:Ethics Considerations Regarding Artificial Womb Technology for the Fetonate Additional informationFundingThe author(s) reported there is no funding associated…

The FDA’s Dueling Narratives: Protector Versus Obstacle

Marc A. Rodwin

The traditional narrative portrays the Food and Drug Administration as the protector of patients from drugs that have not been proven safe and effective. Recently, a different narrative has arisen that sees the agency as an obstacle to…

A humane society after Dobbs?

O. Carter Snead’s book, What it Means to Be Human, is really two books. One is an idealistic program for cultural renewal. The other is a diatribe against a philosophy that he calls “expressive individualism.” Both are presented as a criti

Caution about COVID vaccines for kids

Five separable but interrelated issues should inform policies about COVID vaccines for kids. First, what is the goal? Vaccine doesn’t prevent infection but it decreases the likelihood of severe disease. So any measure of efficacy must loo

Nights of Plague and Lessons of History

Orhan Pamuk’s novel Nights of Plague feels ripped from the headlines. A deadly infectious disease that started in China is threatening the world. Leaders first deny the threat, then harness fear and confusion to expand their authorita

UK Appeals Court Supports Ableism

Ms. Heidi Crowter has Down Syndrome. So does her son Aiden. She thinks that her and her son’s lives are are worth living. She thinks that the current British law governing abortion devalues her life in a way that causes her harm. She su

The SARS-CoV-2 Lab-Leak Theory and the Dog That Did Not Bark

In a Sherlock Holmes story, a racehorse disappears on the night before a big race. Holmes is called in to investigate. He focuses not on the evidence that was collected but, instead, on a bit of key evidence that is missing. A dog that s

Converging Crises for Kids

Two ominous trends, and two ends of the illness severity spectrum, portend trouble for kids who need health care and the doctors who take care of them.The first one is that kids are healthier than they have ever been. Many kids used to die

COVID, Colonoscopies, and Certainty

OK, just “follow the science.” What the hell does that mean? Philosophers of science know that scientific knowledge is value-laden. We decide what to study, how to study it, and then how to analyze results and draw inferences based on our

What matters with Kansas

Sedgewick County, home of Wichita, voted 58-42 to preserve abortion rights. That says it all. The organized anti-abortion movement started in a football stadium at Wichita State University in the summer of 1991. More than 25,000 anti-abor

Three really good bioethics books

While giving birth to her second child, Josephine, Dr. Jane Lee has a uterine rupture. It was misdiagnosed. Her baby went without oxygen for a long time and suffered significant brain damage. Her book, Catastrophic Rupture, A Memoir of He

So? Gonna immunize your kids?

Parents in the US make up their own minds about immunizations. Almost all consent to some vaccines for their kids. Over 99% of US children have received at least one dose of one vaccine. But immunization rates vary for different vaccines.

Conscience claims after Roe v. Wade

Fifteen years ago, we reported that 16% of doctors in the United States would neither discuss abortion with patients nor refer their patients for one. We defended the right of these doctors to practice according to their conscientiously he

The reality of compulsory pregnancy

Annie Ernaux describes her abortion like this, “I could see the tiles between my thighs. I pushed with all my strength. It burst forth like a grenade, in a spray of water that splashed the door. I saw a baby doll dangling from my loins at

Making football safe for prayer

There are some serious theological questions here. What sort of God would desire prayers offered on the fifty yard line immediately after a football game? What sort of judge would consider such prayers to be personal and private?The majo

Helping Students Cheat

I just had a really weird experience. I was searching for my 2016 essay about Henrietta Lacks. To critique Rebecca Skloot’s book about Ms. Lacks and her family, Skloot’s book is commonly assigned on college campuses today. I draw on Wall

COVID Orphans: The Hidden Pandemic

Children are less likely than adults to die of COVID-19. But over 200,000 children in the United States have lost a home caregiver – a parent or grandparent – to COVID. Around the world, millions of children have been orphaned. Orphanhood

Good science without pain

Are there ever situations in which a painful sham procedure can be done (with analgesia) in order to increase the scientific rigour of the study?Babies in neonatal intensive care units undergo many painful procedures.&#009

School shootings and political will

Americans love their guns. They vote based on that passion. Politicians follow the votes. A recent Pew poll shows a deeply divided country.About half see gun violence as a big problem. Half don’t. The percentage of American who favor stric

Thirteen Ways of Looking at Henrietta Lacks

Wallace Stevens wrote “Thirteen Ways of Looking at a Blackbird” to suggest that what we see is never simply what is there. Seeing always requires imagination. I’ve tried to imagine thirteen ways of looking at Henrietta Lacks.

The Moral Cost of Methodologic Rigor

What sort of sicko would want to give a critically ill baby a useless and painful shot? Only a sadist! Or a scientist! The history of research ethics is full of stories about scientists causing harm because their moral sensibilities wer

Let's talk about gender identity

I'll admit it: I am afraid to write about gender. I'm sure to say the wrong things. I'll say "gender dysphoria" when I should say "gender incongruence" or "disorder" when I should say "difference."

Current controversies in neonatal resuscitation.

Ennis BJ, Reed DJ

The goal of neonatal bioethics is to help clinicians navigate difficult decisions that arise every day in the care of critically ill newborns. Over the last few decades, there have been vigorous discussions of numerous ethical issues. For…

Disposition Decisions in Cases of Medical Complexity and Health Inequity.

Shapiro JP, et al.

The question of optimal disposition for children with complex medical and social circumstances has long challenged the well-intentioned clinician. The coronavirus disease 2019 pandemic created unique difficulties for patients, families,…

The moral risk of methodological purity

Babies feel pain.1 A baby's painful experiences can have long-term psychological effects.2 We have effective methods to relieve pain. It is morally imperative that we use them to reduce babies' pain and suffering as much as safely…

Ethical and epistemic issues in the design and conduct of pragmatic stepped-wedge cluster randomized clinical trials

Carole A. Federico, et al.

Stepped-wedge cluster randomized trial (SW-CRT) designs are increasingly employed in pragmatic research; they differ from traditional parallel cluster randomized trials in which an intervention is delivered to a subset of clusters, but not…

Fetal Therapies and Clinical Research: Beyond Risk and Benefit

Lesha D. Shah, et al.

This article refers to:A New Ethical Framework for Assessing the Unique Challenges of Fetal Therapy TrialsConsidering Reprogenomics in the Ethical Future of Fetal Therapy TrialsConsents (and Contents) Under Pressure: Maintaining Space for…

Suicide Risk in Adolescents During the COVID-19 Pandemic.

et al.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic created high levels of psychological distress and may have increased suicide risk. METHODS: We used the 4-item Ask Suicide-Screening Questions (ASQ) to assess suicide risk among…

Ethics of care for the micropreemies. Just because we can, should we?

Debates about treatment for the tiniest premature babies focus on three different approaches - universal non-resuscitation, selective resuscitation, and universal resuscitation. Doctors, hospitals, and professional societies differ on…

Ethical and scientific complexity in debates about COVID vaccination in children

Dominic Dominic, Annie Janvier

Decisions about COVID-19 immunisations for children must consider five interrelated issues. First, one must clarify the goals of immunisation. Is it to prevent infection, severe infection, hospitalisation or mortality for the immunised…

Should We Aspire to Be Rational About Letting Babies Die?

Click to increase image sizeClick to decrease image sizeThis article is referred to by:Postponed Withholding: An Ethical Tool for Health Care Personnel to Empower ParentsThis article refers to:Postponed Withholding: Balanced…

Next generation sequencing in neonatology: what does it mean for the next generation?

Annie Janvier, Keith J. Barrington

Rapid whole genome sequencing (WGS) and whole exome sequencing (WES), sometimes referred to as "next generation sequencing" (NGS) are now recommended by some experts as a first-line diagnostic test to diagnose infants with suspected…

Ethics knowledge, attitudes, and experiences of tertiary care pediatricians in Ethiopia

Atnafu Mekonnen Tekleab

BACKGROUND: Pediatricians in developing countries face different ethical dilemmas than do doctors working in settings with more resources. There are very few studies from developing countries analyzing pediatricians' knowledge and…

17 First Attempt

Martha Gershun

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Promoting COVID-19 Vaccination on Social Media.

Raza F

People’s willingness to get immunized against coronavirus disease 2019 (COVID-19) continues to shift.1 Vaccine hesitancy remains high in minority communities.2 We do not know how parents will respond when the vaccine becomes available for…

Index

Martha Gershun

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

7 What Are the Risks?

Martha Gershun

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Balancing risks and benefits of open notes for neonatology.

Lou LJ, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

The Endgame

Martha Gershun

This chapter begins with detailing the author's final results following her three-day grueling tests for glucose tolerance, psychological screening, kidney function, EKG, and a chest X-ray. The author found out that there was an issue with…

Frontmatter

Martha Gershun

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

The Effect of COVID-19 on the Detection and Prevalence of Suicidality in Adolescents

et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

18 Second Attempt

Martha Gershun

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

A Look Back at Bioethics: William L. Meadow, 1948-2019.

William L. Meadow, MD, PhD, died at the age of 70 years on Saturday, September 14, 2019. Meadow was a consummate neonatologist, a devoted teacher, a great soccer coach, an accomplished a cappella singer, and an iconoclastic bioethicist. He…

Sources of Unease About the Use of Genome Sequencing for Diagnosing Rare Diseases in Children.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Lessons From the Pandemic: How a Children’s Hospital Responded to the Challenges of COVID-19

et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Reply.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Ethical issues in treatment of babies born at 22 weeks of gestation.

Many centres now report that more than half of babies born at 22 weeks survive and most survivors are neurocognitively intact. Still, many centres do not offer life-sustaining treatment to babies born this prematurely. Arguments for not…

Shared Decision Making, Truth Telling, and the Recalcitrant Family

Discussions between pediatricians and parents about withholding or withdrawing life-sustaining treatment are emotionally difficult. There is uncertainty on both sides. Doctors are often making a probabilistic assessment of the chances that…

The Arcane Process of Screening Living Donors

Martha Gershun

This chapter focuses on the careful medical and psychosocial screening that is required for living donors. It analyzes the motivations of family donors, voluntariness, and the possibility of intrafamilial coercion. In the early days of…

Dear President Biden: We Need a Truth and Reconciliation Commission

“Old Black Joe still picking cotton for your ribbons and bows.And everybody knows.”- Leonard Cohen, “Everybody Knows.”African-Americans and other minorities are suffering disproportionately during

What Are the Risks?

Martha Gershun

This chapter examines the risks, both surgical and medical, to donating a kidney. It reviews the financial ramifications of donating a kidney and the nonmedical risks of living with only one kidney — organ damage from contact sports. The…

Evaluation at Mayo

Martha Gershun

This chapter begins with narrating the author's preparation for the required tests and evaluations at the Mayo Clinic. It reviews the two purposes of the tests and consultations: they were designed to ensure that donating an organ would…

19 Follow-Up

Martha Gershun

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Going Public, Moving Forward

Martha Gershun

This chapter looks at how the author and Deb Porter Gill decided to go public on social media about their match. The chapter narrates the people's reactions upon hearing their story, most either thought the author was a living saint or a…

Resources

Martha Gershun

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

9 The Endgame

Martha Gershun

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Implementing Universal Suicide Risk Screening in a Pediatric Hospital

Shayla A. Sullivant, et al.

BACKGROUND: Health care providers are in a prime position to identify teens at risk for suicide, yet many do not. The research team developed and implemented a hospitalwide program to identify teens at elevated risk for suicide and connect…

Meeting “My” Recipient

Martha Gershun

This chapter talks about the process of medical tests, information sessions, and psychological evaluations after Deb Porter Gill and the author matched with on all six HLA tissue type markers. The chapter displays the author's excitement…

The Countdown Begins

Martha Gershun

This chapter begins with Deb Porter Gill and the author's discussion about directed donation after their chain in the paired exchange called off. The chapter then displays Deb's frustrations with the Mayo Clinic's lack of communication and…

The Odyssey Continues

Martha Gershun

This chapter chronicles the author's narrative following her new hypertension medication routine until her blood pressure met Mayo standards. It details the costs, the hassles, and the barriers to donating a kidney that the author…

Do I Own My Organs?

Martha Gershun

This chapter evaluates the author's narrative after her meeting with Deb Porter Gill. It offers a variety of outcomes if the author had not liked Deb and withdrawn the offer to donate. That could have been for any reason, including…

The Main Challenges in Pediatric Ethics from Around the Globe

Nico Nortjé, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Grappling With Racial Health Inequity in Pediatric Cardiology.

Cherestal B, Lewis T

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Rates of Positive Suicide Screens among the Emergency, Inpatient and Outpatient Clinics at a Tertiary Care Children’s Hospital

Fajar Raza, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.