Contents

Abstracts

Scientific Imperialism or Service to Humanity? The Complexities of the Human Genome Diversity Project
Katharine Creskoff
Dartmouth College

Since 1991, the Human Genome Diversity Project (HGDP), a project that aims to sample the world's genetic diversity, has attracted much attention and controversy. The HGDP is seen as a counterpart to the Human Genome Project, which utilizes genetic samples taken mainly from people of European origin. The goal of the HGDP is to study the eighty-five percent of the world's people who are not of European origin and to gain valuable knowledge about human genetic diversity. This information is important in understanding human origins and susceptibility to disease. Yet, despite the laudable objectives of the HGDP, due to complex ethical issues such as intellectual property rights, informed consent, race and the treatment of indigenous peoples, the Project remains only a proposal. If the many ethical issues can be resolved, however, the HGDP has the potential to greatly benefit humanity.

A Rawlsian Case for Physician-Assisted Suicide
Peter Moyers
Princeton University

This article explores and advocates the legalization of physician-assisted suicide for mentally competent, terminally-ill adults based on the philosophy of John Rawls in A Theory of Justice. The author argues that in order for the life plan of each individual to be respected, the government must allow individuals to control the time and manner of their own deaths. Objections are then examined applying the philosophy of Lord Patrick Devlin as outlined in his Morals and the Criminal Law. Devlin's alternate moral reasoning, however, is unconvincing and his framework for describing societal harm in allowing physician-assisted suicide does not apply to this private decision.

Race and Tuberculosis: Coincidence or Correlation?
Rob Pitkofsky
Binghamton University

Tuberculosis has afflicted human civilization for centuries. Early on, researchers believed that poor environmental and social conditions increased the likelihood of widespread infection. In the mid 1980's TB incidence began to rise once again at alarming rates. In addition to the rise in the number of cases, new studies have demonstrated that the bacteria that causes Tuberculosis today is more virulent than ever before and resistant to modern pharmaceuticals. Risk factors such as HIV infection, socioeconomic status, and the lack of adherence to strict regimes of antibiotics have hampered scientists' efforts to eradicate the disease.

Paper Shields Why Advance Directives Still Don't Work
Glenn McGee, Ph.D.
Center for Bioethics, University of Pennsylvania

Living wills, the most common advance directive for health decision-making, do not and cannot work for patients. The reason lies in the core assumptions made by the framers of living wills, and, more importantly, in the incommensurability of those assumptions with the world of health care. Health and disease at the end of life are irrevocably textured by forced trust of practitioners' medical judgment and by necessary conversations between practitioners and patients about the meanings and goals of treatment. The advance directive, and particularly the living will, attempt to answer the questions that cannot be answered in advance. Only by acknowledging the necessity of dialog and trust can the promise

Genetic Testing of Children and Adolescents: Ethical, Legal and Psychosocial Implications
William Martinez
Dartmouth College

The molecular revolution continues to generate an increasing number of tests for inherited genetic mutations. These tests reveal the presence or absence of a genetic malady and may also reveal carrier status for certain recessive disorders. When these tests are offered to children and adolescents, a unique set of ethical, legal, and psychosocial challenges arise. While emancipated and mature minor laws give certain minors ultimate control over medical decisions, these laws have a very limited impact on the debate. Moreover, parents are generally given the authority to make medical decisions regarding their children. Although testing may offer medical and psychosocial benefits, it may also lead to in intrafamilial conflict and harm the child's self-image.

FORUM: Parents Refuse Life-Saving Treatment for Newborn

Case Study: A young couple comes to the hospital to deliver their first child. When the baby is born, the parents are dismayed to discover that the baby has a debilitating birth defect. This defect causes severe mental retardation as well as a shortened life span. The couple also discovers that their baby needs a minor surgery to remove a blockage, or atresia, of the intestines. The surgery is minor and virtually risk-free, however without the surgery the baby will die. The parents decide to refuse the surgery explaining that they want to reduce the child's suffering in the long run. Should the surgeon allow the couple to do this?

The authors debate the role of the State in parental decision-making affecting the life of the newborn child.

The Right to Choose Stacey Smith, Princeton University
Our Moral Obligation Marc Otten, Princeton University

The Multi-Faceted Implications of Preimplantation Genetic Testing
Linda Hasadsri
University of California-Berkeley

This article discusses several arguments both for and against preimplantation genetic testing (PGT). Though revolutionary in its capabilities, PGT has been the subject of much debate and controversy because it employs the selection and elimination of embryos on the basis of genetic traits. The moral status of the embryo must be analyzed and potential drawbacks of the procedure, including the use of PGT for superficial reasons and to discriminate against the disabled, must also be taken into consideration. Couples who are at risk of having offspring with congenital disorders, however, may benefit from PGT because it will enable their children to be born free of certain heritable diseases. Not every parent is emotionally and financially capable of raising a disabled child; PGT may spare them grave social and economic hardships.

AIDS, Thalidomide and Maternal-Fetal Rights in Conflict
Evan Fieldston
Princeton University

In the late 1950s, thalidomide was introduced to the world pharmaceutical market as a safe sedative. By 1962, the drug had been withdrawn, after its teratogenic effects were discovered. Now, however, thalidomide is making a comeback. Current clinical trials show the drug to be safe and effective as a treatment for painful and debilitating mouth and gastrointestinal ulcers that afflict AIDS patients. While the drug has been proven to be beneficial for AIDS patients, some are worried that women will take the drug while pregnant. The fundamental issue raised by this case is a conflict between maternal and fetal interests, and the duties of a woman to a not-yet born child. This article considers the moral obligations to a fetus destined to be born, and society's role, if any, in restricting the use of thalidomide in an effort to prevent the birth of deformed children.

A Case-Based Approach to Sterilization of Mentally Incompetent Women
Rebecca M. Keown
University of Toronto

This paper examines the best interests or welfare standard and the rights-based approach to deciding cases of sterilization of mentally incompetent women. Focus is placed on the decisions in three different sterilization cases - in particular, Re Eve, Re B and Marion's Case. Criticisms are made regarding the notion of adopting a solely rights-based approach to determining whether a mentally incompetent woman should be sterilized and recommendations are made for adopting the best interests standard.