By Lainie Friedman Ross and J. Richard Thistlethwaite
Living donor transplantation has been controversial since its inception because it exposes donors to medical risks for the medical benefit of their intended recipients. The usual bioethics argument about the moral permissibility of living kidney donation focuses on the concept of respect for persons which is often articulated as respect for autonomy: adults with decisional capacity have the right to decide whether the risks of donation outweigh the harms. The problem with this analysis is threefold. First, living donation is only undertaken because of the lack of a readily available, comparably effective alternative treatment for end stage renal disease. If there were an adequate alternative treatment that did not place a separate individual at risk, living donation would cease. Second, the focus on the competent adult’s right to be independent in his or her decision making employs an exclusively negative conception of autonomy whereas respect for persons also includes a positive conception of autonomy in which health care providers go beyond the provision of mere facts and translate the information into concepts comprehensible and empowering to the average patient who can then participate more effectively in a shared decision making process. It entails providing support and structure in order for potential living donors to get a better grasp of the risks and benefits including the psychosocial and emotional consequences of the decision in order to make a decision that reflects their considered judgement. Third, the decision to be a living donor is usually done within the social context of the specific potential donor. As such, any living donors is potentially vulnerable to multiple social pressures to donate, some of which she might not be fully aware.
Living donation is not unique in its exposure of one person to risks for the benefit of other(s). Research involving human participants exposes the participants to risks for the benefit of future patients. This is not to deny that many living donors describe benefits to donation, as do research participants about their participation. Nevertheless, the analogy to human subjects research suggests that the moral considerations of human subjects protection may help us think more clearly about the protections for living donors.
In the late 1970s in the United States, the National Commission for the Protection of Human Subjects of Biomedical and Behavior Research [National Commission] published the Belmont Report in which the National Commission articulated 3 principles to serve as the basis for a research ethics framework–respect for persons, beneficence and justice which were operationalized into informed consent, risk: benefit analyses and the fair selection of subjects with a focus on “vulnerable populations”. Twenty years later, in a paper commissioned by the National Bioethics Advisory Committee (NBAC), a successor to the National Commission, Kenneth Kipnis argued that the National Commission’s concept of “vulnerable populations” failed to explore in what ways particular groups of people were vulnerable thereby risking unnecessary protections for some and inadequate protections for others. He proposed a vulnerabilities taxonomy that explored the different types of vulnerabilities that research participants may feel, a taxonomy that he continued to modify and develop even after its initial publication. All told, he identified 8 vulnerabilities: cognitive, juridic, deferential, social, medical, situational, allocational and infrastructural.
In our article, we propose an ethics framework for living donors, incorporating the three principles of the Belmont Report (respect for persons, beneficence and justice) supplemented by a vulnerabilities taxonomy. We also add a fifth principle, the moral responsibility of the transplant team. This principle is derived from Robert Goodin’s book entitled Protecting the Vulnerable (Chicago: University of Chicago Press, 1985) in which he argues that, because health professionals stand in special relationship with patients, they are therefore responsible for both promoting and protecting their well-being. In living donor transplantation, then, the donor transplant team is responsible for empowering prospective donors to address their vulnerabilities, and/or for protecting those who cannot by disqualifying them from donation.
In our paper, we consider the real case of a parent who donated a kidney to his daughter. The kidney failed, and he requested to give her his second kidney, knowing it would leave him anephric and dialysis dependent. She was willing to accept it. Autonomy, as commonly conceived as independent decision making, would make the second donation ethically permissible. While we agree that it is necessary that both donor and recipient judge the benefits to outweigh the risks, this calculation is not sufficient if it would allow serious harm to either the donor or recipient. In this case, the transplant team declined to perform the procedure. As moral agents in a special relationship with the potential living donor, they accepted their responsibility to protect the father from his autonomous decision because they perceived the outcome as too harmful. The hospital’s ethics committee agreed.
In sum, our paper develops an ethical framework for living donor transplantation using the 3 principles of the Belmont Report–respect for persons, beneficence, and justice–supplemented by 2 additional principles: vulnerability and responsibility. We believe this framework can be used to explore the ethical challenges raised by current and evolving living donor transplantation practices and policies.
Paper: Developing an Ethics Framework for Living Donor Transplantation
Authors: Lainie F Ross1,2,3, J Richard Thistlethwaite2,3
1 Department of Pediatrics, University of Chicago, Chicago, Illinois, USA
2 Department of Surgery, University of Chicago, Chicago, Illinois, USA
3 MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, Illinois, USA
Competing interests: None declared.