Introduction: The Future is Now—Promoting Human Rights in the Context of Bioethics

Vol. 34 No. 4

By

Robyn S. Shapiro is the Ursula von Der Ruhr Professor of bioethics and director of the Center for the Study of Bioethics at the Medical College of Wisconsin. She is a partner in the Health Law Practice Group of Drinker Biddle & Reath LLP and regional partner in charge at the firm’s Milwaukee office. She currently serves as the chair of the ABA’s Section of Individual Rights and Responsibilities.

Since its emergence in the 1970s, the field of bioethics has grown in terms of size, scope, and importance. In addition to becoming a staple in newspaper headlines and talk show topics, bioethics now has a prominent place in academia, at the bedside, and among health policy makers.

Since its inception, bioethics and law have been intimately connected. For example, the establishment of regulations governing human subjects research in the United States, as well as judicial recognition of patients’ rights to refuse unwanted medical treatment, are landmark events in the development of the bioethics field in this country.

Within the law-bioethics relationship, over the past decade, an increased focus on global human rights in bioethics has flourished. In 1997, the Council of Europe adopted the Convention on Human Rights and Biomedicine, which covers matters such as equitable access to health care, consent, private information, the human genome, scientific research, and transplantation. This convention seeks to establish a direct relationship between bioethics and human rights, emphasizing respect for human dignity in scientific research, and also in the prohibition of the commercialization of human genes and human reproductive cloning. The great similarity between portions of this European Convention and the U.S. Belmont Report, which sets forth quintessential requirements for the ethical conduct of research in this country, illustrates the importance of transnational human rights in guiding the evolution of contemporary norms for global bioethics. The recent work of the United Nations Educational, Scientific, and Cultural Organization (UNESCO) also underscores the importance of global human rights in the development of bioethical guidance. In 2005, UNESCO adopted an international declaration of universal norms for bioethics as a possible model for a future multinational treaty. This Declaration on Bioethics and Human Rights seeks to promote equitable access to medical, scientific, and technological developments consistent with safeguarding respect for human dignity and protecting human rights and fundamental freedoms.

Most recently, in the context of growing global health disparities, terrorism, and pandemics, the importance of human rights issues in bioethics has become particularly acute. We struggle to address questions such as:

 • Do the human rights of the very poor require the affluent to help alleviate the global health crisis? If so, how should such assistance be provided so as to create a socially enduring solution?

 • With respect to public health ethics, how do we appropriately balance human rights duties owed to individuals as such against the duties owed to individuals as members of the population? For example, in deciding how to distribute vaccines in the face of a flu pandemic, should the rationing scheme be based on the priority of individual claims (e.g., the most vulnerable people, or the people most likely to survive) or on the overarching objective of minimizing transmission throughout the population (which would instead give priority to the people most likely to transmit the virus)?

These questions illustrate the important intersections between bioethics and international human rights, and stress the need for bioethics to embrace these intersections so as to address contemporary global challenges most effectively.

The ABA Section of Individual Rights and Responsibilities has a long and proud history of promoting human rights in the context of bioethics issues. For example, the AIDS Coordinating Group, launched by the Section, has supported programs that recognize the inseparable connection between health, human rights, and ethics in addressing the HIV/AIDS epidemic. In addition, the Section has promoted human rights issues through its ABA policy initiatives, including a recent ABA resolution sponsored by the Section that supports freedom of scientific inquiry to promote human health. The Section’s national security and death penalty groups have embraced human rights and bioethics concepts in their efforts to help define the roles and obligations of health care professionals in executions and in prisons. This special bioethics issue of Human Rights magazine, which I have had the pleasure of coediting with my talented colleague, Steve Wermiel, with invaluable assistance from Angela Gwizdala, is yet another contribution of the Section to promoting the link between bioethics and human rights.

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