Tag: kidney transplantation

Bioethics Blogs

Not-so-lethal – the ethics and costs of extraordinary fetal intervention

By Dominic Wilkinson (@Neonatal Ethics)

Late last month, a paper in the US journal Obstetrics and Gynecology reported the extraordinary case of Abigail Beutler. Abigail is now 14 months old. She was born without kidneys, a condition sometimes called ‘Potter’s syndrome’. Potter’s syndrome is normally universally fatal in the newborn period, because without kidneys the fetus does not produce urine and has little or no fluid around them. Without any fluid around the fetus, their lungs do not develop.

Abigail is the first baby to ever survive with this condition. Doctors infused artificial fluid into the uterus around her (amnioinfusion) on five occasions during the pregnancy. This seemed to allow her lungs to grow. Although she was born 3 months prematurely, she had only minor breathing problems at birth. She has received kidney dialysis since soon after birth, was discharged home after 19 weeks and is now reportedly being considered for a kidney transplant. There are a number of issues raised by Abigail’s case.

First, this case represents the ultimate challenge to the concept of a ‘lethal congenital malformation’. Some birth defects are so severe that doctors refer to them as ‘lethal’. The implication is that the baby will inevitably die despite treatment. However, long-term survival had been described in almost all of the conditions that are commonly referred to as ‘lethal’, for example Trisomy 13, trisomy 18, anencephaly, suggesting that this terminology was misleading. The only exception to this used to be Potter’s syndrome, where survival had never been reported.

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.

Bioethics Blogs

Intentionally Exposing Patients to HIV: When Might it be Ethical?

Guest Post by Bram Wispelwey, Ari Zivotofsky, and Alan Jotkowitz

Much has been made of the fact that over the last two decades HIV has transformed from an inevitable, agonising killer into a controllable chronic disease.  But have we reached a point where infecting someone with HIV in order to avoid other, potentially worse health outcomes might be justified?  In the realm of organ transplantation we found that if we are not yet there, perhaps we should be.

Our paper was in part inspired by what many considered a shocking ruling by former Israeli Chief Rabbi Eliyahu Bakshi-Doron, who decreed that it was consistent with Jewish religious law for HIV-negative individuals to receive HIV-positive organ transplants, even if the evidence indicates a possibility for the recipient to contract the disease.  Many considered this opinion premature because only recently had HIV-positive individuals been found to be good candidates for solid organ transplantation, and doctors in South Africa were still in the early research stages of examining kidney transplantation between HIV-positive individuals.  But in examining the ethical considerations of autonomy, beneficence, non-maleficence, and justice, we argue in our paper that Rabbi Bakshi-Doron’s opinion is ethically sound.

Focusing on the history of HIV in transplantation and using a comparison to current practice with regard to another infectious disease, cytomegalovirus, we demonstrate that disallowing HIV-negative candidates from receiving HIV-positive organs would be a significant limit on patient autonomy.  The elimination of the ban on this type of potentially life-saving (and improving) donation may also represent a more socially just option, as it would expand the donor pool and engender cost savings.

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.