Peer-reviewed article
Can Parents Refuse a Potentially Lifesaving Transplant for Severe Combined Immunodeficiency?
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…
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 this disease. Although potentially lifesaving, prognosis of HSCT in SCID is variable depending on a number of host and donor factors. Of the survivors, many develop secondary problems such as chronic graft-versus-host disease or even second malignancies. Posttransplant care is complex and requires great effort from parents to adhere to difficult treatment regimens. In this article, we address the difficult ethical question of what to do if parents choose not to have their child with SCID undergo HSCT but prefer palliative care.
Related writing.
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
About the author
John D. Lantos is a pediatrician and bioethicist writing on AI in medicine, neonatal intensive care, and end-of-life decisions. His essays appear in JAMA, JAMA Pediatrics, the Hastings Center Report, the New England Journal of Medicine, and Aeon. Read more about John.