Organ Donation

When families disagree with experts

I wrote last week about the deliberations at an FDA Advisory Committee meeting about an innovative gene therapy treatment for Duchenne Muscular Dystrophy. I highlighted the disconnect between the comments made by parents and patients, who

This is not a three-parent child

A strange paper recently appeared in Nature, reporting that some (“fewer than five”) babies had been born in the UK following a procedure known as mitochondrial replacement therapy (MRT.) The report was strange because it was not coming f

Money, miracles, and mortality in SMA

The child in the picture has spinal muscular atrophy (SMA). She made the news in Mumbai when her parents tried to one of the new and extraordinarily expensive treatments for her. This week's news was about two children who died from liver

Brain death and xenotransplantation research

OK, so researchers have genetically modified pigs and then transplanted their hearts into brain dead human bodies. Yesterday’s dystopian science fiction has become today’s human interest story. One of the most shocking things about these

Miscarriages (of justice)

Bioethics was born as a result of debates about contraception and in vitro fertilization. The challenge was to explain why reproductive decisions belonged to individuals and not to the state. In the 1950s, research on oral contraception w

Surgery is the new sex

What, exactly, makes us human? Or inhuman? Those questions animate David Cronenberg’s disturbing new film, Crimes of the Future. The questions are not asked straightforwardly. Scene 1: A beautiful boy plays on the seashore. Behind him, a

The cost of miracles

If you knew that your child would be unable to walk, talk, swallow or breathe on their own, how much would you pay for a curative drug? Such drugs recently became available for children born with spinal muscular atrophy (SMA). One cost $

Donate a Kidney, Visit Yellowstone

When Martha Gershun donated a kidney, it cost her about $6000 out-of-pocket. The costs were for lost work, travel, and other incidental expenses. She and I wrote a book about the barriers that often prevent people from donating an o

Vaccine hesitancy: the appearance of the bull

"Do you know how many shots they give to two month old babies?? Five! Five different shots. And some are combinations. That can't be good for them." I've talked to many parents who were hesitant to give their children routine i

10 Paired Exchanges, Chain Donations, and Organ Markets

Martha Gershun

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

Kidney to Share

Martha Gershun

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

Paired Exchanges, Chain Donations, and Organ Markets

Martha Gershun

This chapter introduces the use of an innovation called “paired exchange,” a way to encourage donations even when there is no match. The chapter shows a graphic presentation to simply describe the idea of paired donation exchange. It…

Complexities of Increasing Organ Supply

Martha Gershun

This chapter investigates why the various matching and swapping arrangements are hard to implement, arguing it is difficult to schedule even one transplant in ways that are convenient for the donor and meet the needs of the recipient. The…

Ethics, Organ Markets, and Dry Ice

Martha Gershun

This chapter argues that thr author's dry ice saga graphically illustrates one of the central problems in organ donation today. It examines why most medical centers make it harder than is needed for people to donate organs. Advocates for…

Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results

Craig S. Wong, et al.

DNA is now commonly collected in clinical research either for immediate genomic analyses or stored for future studies. Many genomic studies were previously designed without awareness of the ethical issues that might arise regarding the…

When a Child Needs a Transplant but Lacks Familial Social Support.

Mabel H, et al.

We present the case of a 19-month-old boy with complex congenital heart disease. His single father is skeptical of traditional medicine and does not offer the social support needed to make heart transplantation successful for his son.…

Pediatric Organ Donation and Transplantation

Laura Miller‐Smith, Ásdís Finnsdóttir Wagner

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

When a Child Needs a Transplant but Lacks Familial Social Support

Hilary Mabel, et al.

We present the case of a 19-month-old boy with complex congenital heart disease. His single father is skeptical of traditional medicine and does not offer the social support needed to make heart transplantation successful for his son.…

Can Parents Refuse a Potentially Lifesaving Transplant for Severe Combined Immunodeficiency?

Andrew S. Nickels, et al.

If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for…

Ethical Issues in End Stage Kidney Disease (ESKD)

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

Parental refusal of a liver transplant for a child with biliary atresia.

Cronin DC, et al.

Pediatricians are required by law to notify child protection agencies if parents are neglecting their child’s medical needs. Sometimes, however, it is difficult to determine when a particular parental choice ought to be reported. If the…

Should a Nonadherent Adolescent Receive a Second Kidney?

Bradley A. Warady

Case Carl is 17-1/2 years old and has familial nephrotic syndrome due to focal segmental glomerulosclerosis. His sister also developed renal failure; she underwent hemodialysis and then transplantation. Carl had observed that her quality…

Parental Refusal of a Liver Transplant for a Child With Biliary Atresia

David Cronin, et al.

Pediatricians are required by law to notify child protection agencies if parents are neglecting their child’s medical needs. Sometimes, however, it is difficult to determine when a particular parental choice ought to be reported. If the…

Extracorporeal membrane oxygenation after stem cell transplant: Clinical decision-making in the absence of evidence

Rachel K. Wolfson, et al.

OBJECTIVE: To discuss the ethical dilemmas that arise in considering innovative therapies for critically ill children when there is little data to support their use. DESIGN: Case report of a 13-yr-old patient after autologous peripheral…

"The Surgeon General's Workshop on Increasing Organ Donation: Background Papers: 'Re-Evaluating Donor Criteria: Live Donors' " (pages 271-290)

Mark Siegler

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

Financial impact of liver transplant surgery (Reply)

Peter Singer, et al.

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