Prominent among the arguments against the legalization of assisted suicide is the contention that legalization will have a disproportionately adverse, or “disparate,” impact on various vulnerable groups. There are many versions of this argument, with different advocates of this argument focusing on different vulnerable groups, and some advocates confusedly blending slippery slope and social justice concerns. Also, the weight placed on this argument by its various advocates is not uniform, with some including the argument in a list of multiple, apparently similarly persuasive, reasons for not legalizing assisted suicide, while others place significant reliance on it and yet others advance the argument without any clear indication of its importance. Nonetheless, the various versions share a common core: One reason assisted suicide should not be legalized is that members of certain vulnerable groups are more likely to be pressured into requesting it, whether directly by those hostile or indifferent to their interests, or indirectly by social circumstances, such as an inability to pursue other healthcare choices.

In “Should We Impose Quotas? Evaluating the ‘Disparate Impact’ Argument Against Legalization of Assisted Suicide,” Ronald Lindsay argues that it should make no difference to the debate over legalizing assisted suicide whether the risks associated with legalization would fall disproportionately on the poor, people with disabilities, racial minorities, or any other especially vulnerable social group. Even assuming such an inequitable distribution of risks would occur, he maintains, attempting to avoid such an outcome is not a good reason to deny assisted suicide to “competent persons who truly voluntarily choose it.”

Those of us who worry that legalization will differentially burden already disadvantaged segments of society have generally taken it for granted that the possibility of such disparities raises significant public policy concerns. By insisting on an explanation of this assumption — and, in so doing, making explicit the tension between autonomy and equality that underlies the assisted suicide debate — Lindsay has significantly advanced the ongoing conversation. While I disagree with his analysis, I commend him for a thoughtful, provocative, and important contribution to the literature.

Serious concerns about pervasive, persistent, and unjustified social inequalities have prompted a small—but growing—number of academic commentators to raise some hard and troubling questions for those who would like to legalize physician-assisted suicide. In various ways, these commentators have asked: In light of existing social inequalities—inequalities that operate, for example, along sometimes intersecting lines of race, class, age, sex (including sexual orientation), and disability—how persuasive are autonomy-based arguments in favor of legalization of assisted suicide when those arguments depend (as they typically do) on a conception of autonomy that either presupposes social equality or does not expressly account for its absence? How compelling are arguments that we ought to legalize assisted suicide out of feelings of mercy for the sick and dying, when such affective expressions may actually be the socially acceptable manifestation of private ambivalence that includes merciless discrimination?

In Grimes v. Kennedy Krieger Institute, the Maryland Court of Appeals (Maryland’s highest court) considered whether it is possible for investigators or research entities to have a special relationship with subjects, thereby creating a duty of care that could, if breached, give rise to an action in negligence. The research under review, the Lead Abatement and Repair & Maintenance Study, was conducted from 1993 to 1996 by investigators at the Kennedy Krieger Institute (KKI), an affiliate of Johns Hopkins University.

After briefly discussing the case at the center of this ruling, I consider how ambiguities within the federal research regulations at 45 C.F.R. § 46 contribute to disagreements among reasonable and informed people of good will about what studies should be approved. I argue that Grimes may be understood as placing restrictions on how these regulations may be interpreted and used.

In August 2001, the Maryland Court of Appeals harshly criticized the Kennedy Krieger Institute of Johns Hopkins University for knowingly exposing poor children to lead-based paint. The court’s decision made national news, and is worth examining because it raises several very important issues for research ethics.

The research conducted by the Institute was an attempt to understand how successful different lead abatement programs were in reducing continued lead exposure to children. Previously, Julian Chisolm and Mark Farfel, of John Hopkins University, had disclosed the dangers of traditional dust-generating deleading practices. In the current study, Dr. Farfel and colleagues sought to document the longevity of various lead-based paint abatement strategies.

In April 1999, Dr. Curt Freed of the University of Colorado in Denver and Dr. Stanley Fahn of Columbia Presbyterian Center in New York presented the results of a four-year, $5.7 million government-financed study using tissue from aborted fetuses to treat Parkinson’s disease at a conference of the American Academy of Neurology. The results of the first government-financed, placebo-controlled clinical study using fetal tissue showed that the symptoms of some Parkinson’s patients had been relieved. This research study involved forty subjects, nineteen women and twenty-one men; all suffered from Parkinson’s disease for an average of 13.5 years. In the study, each subject underwent neurosurgery: “four tiny burr holes, drilled through the wrinkle lines above the eyebrows into the skull, to clear a pathway to the brain. But only half received injections of fetal cells into the putamen, the region of the brain that controls movement; the other half received nothing. One year later, three members of the placebo group said their symptoms had improved.” In two-thirds of the transplant recipients, the fetal tissue took hold and seemed to establish a new network to produce the missing neurochemical dopamine.

In this issue of the Journal of Law, Medicine & Ethics Peter Clark provides a comprehensive and sound ethical analysis of clinical trials examining the treatment of advanced Parkinson's disease with fetal tissue transplantation. These studies raise profound questions about how clinical trials of surgical interventions ought to be conducted. At stake is not only the ethical basis of such trials, but differing views as to the proper role of science in medicine and its limitations.

Experience with the broader debate on the ethical permissibility of placebo controls has taught us that the choice of control treatment is an aspect of trial design in which ethical and scientific issues overlap. Accordingly, I will highlight, and perhaps expand upon, three issues raised by Clark: What scientific questions ought clinical trials of surgical interventions ask? How should the ethical analysis of risk for such trials be conceived? And, are surgical patients a vulnerable population?

The mental illness of substance dependence or addiction is responsible for major economic, social, and personal costs. If we are to elucidate its etiology, understand its mechanisms, and eventually bring it under control, scientific investigation is essential. Research in animals and humans has enhanced our understanding of this disease through examination of genetic, neurophysiological, biochemical, and behavioral factors. But because animals cannot verbalize their subjective responses to drugs and because significant symptoms of addiction (e.g., craving, impaired control, and compulsive use) cannot be observed in non-drug-dependent humans, it is not surprising that certain investigations of substance dependence have required the participation of addicted or substance-dependent humans.

The purpose of this article is to re-visit how rationing is defined for a health-care context, Two reasons justify returning to this topic. First, the variability as to how rationing has been defined in the legal, medical, and philosophical literature justifies a careful examination to identify its critical features. Second, I believe that if the definitions typically employed in the literature, several of which are discussed below, are compared to those that would be offered by the American public, ethically weighty dissimilarities would be apparent. Disparate characterizations are worrisome because serious “disconnections” between policymakers’ understandings, rhetoric, and priorities and those of the general public are more likely.

The discovery of the molecular structure of deoxyribonucleic acid (DNA) and the science of molecular biology have profoundly changed medicine’s diagnostic capability and promise to transform the therapeutic realm. When some genetic disorders are diagnosed, physicians can intervene for prevention or treatment. While the basic structure of DNA is the same for all human beings, no two individuals, other than identical twins (or cloned individuals), have the same DNA sequence. This discovery has had important repercussions in the criminal justice system, where DNA can serve as an identification tool.

At the crossroads of these different uses of DNA, there are great concerns about potential misuses of genetic information. Preventing disease, curing illness, and convicting criminals are all seen as worthwhile uses of the technology, but concerns of potential misuse in medicine or in the criminal justice system are not unfounded. A 1998 American Medical Association (AMA) study showed that 68 percent of patients had fears that their genetic test results would be used against them by their employers or insurers. Others, pointing to racial profiling, have suggested that we may now face genetic profiling.

The Dutch experience has influenced the debate on euthanasia and death with dignity around the globe, especially with regard to whether physician-assisted suicide and euthanasia should be legitimized or legalized. Review of the literature reveals complex and often contradictory views about the Dutch experience. Some claim that the Netherlands offers a model for the world to follow; others believe that the Netherlands represents danger, rather than promise, and that the Dutch experience is the definitive answer regarding why we should not make active euthanasia and physician-assisted suicide part of our lives.

Having investigated the Dutch experience for a number of years, in the summer of 1999 I went to the Netherlands to visit the major centers of medical ethics as well as some research hospitals, and to speak with leading figures in euthanasia policy and practice. This essay commences by providing some background information on the practice of euthanasia and on the legal framework, and then reports the main answers to my first question: Why the Netherlands?

In the post-genome world of biomedical research, an increasingly common research strategy is to focus on large repositories of biological specimens. There are now several well-known efforts to compile vast collections of biological materials, reanalyze extant samples, collect new ones, and link the samples to medical records. The significant issues of law, ethics, and policy raised by these research activities usually are heightened when commercial enterprises play a leading role in accumulating and distributing the samples. Emerging companies are not only compiling repositories for their own use, but some companies are positioning themselves to act as intermediaries, developing vast biobanks for sale to a wide range of other researchers.