Bioethics Blogs

A Ration of Hope

A year ago, a Pennsylvania child expected to die without a lung transplant received the needed organ through the tireless advocacy of her parents, change.org and media campaigns, the intervention of clergy and politicians and a judge’s ruling.

That she is alive today is an extraordinary and heart-warming story of the medically miraculous, one recounted by CNN and NBC News, and the child’s case now has prompted a policy change ending discrimination against children as candidates for adult lungs. Not that it will end discrimination; amid organ scarcity, that isn’t possible. Deserving people die every day awaiting new organs.

Harvard’s Community Ethics Committee recently completed a study of criteria for listing potential pediatric transplant recipients. That process left me with a new appreciation for distributive justice and rationing amid organ scarcity, the competing demands for privacy and decision-making transparency, and respect for clinicians who must determine who is sick enough to need a new organ but otherwise healthy enough to make transplantation successful.

The policy change was among several announced Monday by the board of directors of both the United Network for Organ Sharing and the Organ Procurement and Transplantation Network. The board “approved on a permanent basis a policy change allowing transplant programs to request additional, exceptional priority for adolescent or adult donor lung offers for transplant candidates age 11 or younger. The action followed additional review of a temporary exception adopted in 2013.”

As of Tuesday morning, there were 78,811 active candidates on the waiting list for organs, according to OPTN. How many of them will receive organs is unclear, but most will die waiting.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.