Can parents refuse a potentially lifesaving transplant for severe combined immunodeficiency?

Andrew S. Nickels, G. Douglas Myers, Liza Marie Johnson, Avni Joshi, Richard R. Sharp, John D. Lantos

Research output: Contribution to journalArticlepeer-review

2 Scopus citations


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.

Original languageEnglish (US)
Article numbere20160892
Issue number1
StatePublished - Jul 2016

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health


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