Providing Coverage for the Unique Lifelong Health Care Needs of Living Kidney Donors Within the Framework of Financial Neutrality.

Organ donation should neither enrich donors nor impose financial burdens on them. We described the scope of health care required for all living kidney donors, reflecting contemporary understanding of long-term donor health outcomes; proposed an approach to identify donor health conditions that should be covered within the framework of financial neutrality; and proposed strategies to pay for this care. Despite the Affordable Care Act in the United States, donors continue to have inadequate coverage for important health conditions that are donation related or that may compromise postdonation kidney function. Amendment of Medicare regulations is needed to clarify that surveillance and treatment of conditions that may compromise postdonation kidney function following donor nephrectomy will be covered without expense to the donor. In other countries lacking health insurance for all residents, sufficient data exist to allow the creation of a compensation fund or donor insurance policies to ensure appropriate care. Providing coverage for donation-related sequelae as well as care to preserve postdonation kidney function ensures protection against the financial burdens of health care encountered by donors throughout their lives. Providing coverage for this care should thus be cost-effective, even without considering the health care cost savings that occur for living donor transplant recipients.

Living and deceased organ donation should be financially neutral acts.

The supply of organs­particularly kidneys­donated by living and deceased donors falls short of the number of patients added annually to transplant waiting lists in the United States. To remedy this problem, a number of prominent physicians, ethicists, economists and others have mounted a campaign to suspend the prohibitions in the National Organ Transplant Act of 1984 (NOTA) on the buying and selling of organs. The argument that providing financial benefits would incentivize enough people to part with a kidney (or a portion of a liver) to clear the waiting lists is flawed. This commentary marshals arguments against the claim that the shortage of donor organs would best be overcome by providing financial incentives for donation. We can increase the number of organs available for transplantation by removing all financial disincentives that deter unpaid living or deceased kidney donation. These disincentives include a range of burdens, such as the costs of travel and lodging for medical evaluation and surgery, lost wages, and the expense of dependent care during the period of organ removal and recuperation. Organ donation should remain an act that is financially neutral for donors, neither imposing financial burdens nor enriching them monetarily.

Protection of research subjects: do special rules apply in epidemiology?

Epidemiological studies raise somewhat different ethical issues than those that usually confront IRBs in their review of biomedical research. Although epidemiologic research seldom risks direct harm to subjects, it may still wrong them if it invades their interests (such as privacy) or treats them merely as means. Review by an IRB is thus justified if it improves the benefit-risk ratio; even more important, in most circumstances, informed consent should be obtained in advance from subjects, to promote subjects' autonomy, to improve the quality of research, to regularize the relationship of investigators and potential subjects, and to protect subjects' privacy. Nonetheless, in certain circumstances-illustrated here by considering three hypothetical studies-alternatives to the usual consent rules are acceptable.

Anencephalic donors: separate the dead from the dying.

Proposals to use organs from anencephalic infants to meet the growing need for transplantable organs are well-meaning but misguided. It would be unwise to amend the Uniform Determination of Death Act to classify anencephalics as "dead." They are in the same situation as other patients (such as the permanently comatose). Likewise, amending the Anatomical Gift Act to permit organs to be removed from anencephalics would be unjust, would set a bad precedent, and would likely reduce overall success in this field.

Ironies and tensions in feeding the dying.

KIE: Capron discusses artificial feeding of dying or chronically ill patients in the context of autonomy, paternalism, and community. New medical technologies that prolong life can result in overtreatment of patients and create tensions among patients, family members, physicians, and administrators that draw courts into the decision making process. Capron outlines the legal responses to questions of life-sustaining treatment for incapacitated patients in the cases of Clarence Herbert, Claire Conroy, and Mary Hier. He concludes that, while judges are correct in regarding artificial feeding as a medical treatment, they must also consider the symbolic role feeding plays in caring.^ieng

Looking back at the President's Commission.

KIE: Capron, former executive director of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, reviews the work of the Commission and addresses the question of whether another such body is needed. He sums up the characteristics and functions of the Commission, pays tribute to a predecessor, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, and outlines the areas of the President's Commission's work. He foresees the need for future commissions to analyze new issues, supplement the work of the President's Commission, and monitor the activities of federal departments and agencies.^ieng

The Patient Self-Determination Act: not now.

KIE: The "Ethics committees" column in this issue of the Hastings Center Report features an introduction by Cynthia B. Cohen and four brief commentaries on the roles hospital ethics committees may play in the making of institutional and public health care policy in the 1990s. The implications for ethics committees of the pending federal Patient Self-Determination Act are discussed by John C. Fletcher in "The Patient Self-Deterimination Act: yes," and here, by Alexander Morgan Capron, in "The Patient Self-Determination Act: not now." Capron is University Professor of Law and Medicine at the University of Southern California. He urges the federal government to use other, nonregulatory approaches if it wishes to promote the use of advance directives and to improve the care of dying patients.^ieng