Featuring
Stephen P. Marks
School of Public Health, Harvard University
The linkage of health and human rights (H&HR) refers to the understanding that health status is in large measure determined by the degree to which human rights are enjoyed. It also entails the application of human rights norms to policies and programs of health systems and to the conduct of health practitioners. This linkage is more than ever on the agenda of international agencies, professional associations, activist groups, public opinion, and academic research.
Building on extensive experience with HIV/AIDS, the François-Xavier Bagnoud Center for Health and Human Rights (FXB) and its team of visionary scholar-activists--Sofia Gruskin, Daniel Tarantola, and the late Jonathan Mann--drew attention to the connections between health and human rights nearly a decade ago by creating a journal devoted to that linkage (Health and Human Rights) and by organizing two international conferences (in 1994 and 1996). Other organizations, like Médecins Sans Frontières, Médecins du Monde, Physicians for Human Rights (PHR), Global Lawyers and Physicians, and Doctors for Global Health, as well as the American Public Health Association, have been instrumental in mobilizing professionals to investigate human rights abuses and to apply human rights norms to medical and health practices. The movement of scholars, professionals, and activists concerned with such issues is roughly a decade old and is still evolving. I will discuss four assumptions that appear to be widely shared by those who contribute to thinking and action on health and human rights.
The first assumption is that the H&HR approach includes, but is not limited to, the medical profession's commitment to the ethical treatment of patients and to the use of human rights norms to provide guidance to medical practitioners about certain aspects of their treatment of patients. The traditional role of doctors is to apply knowledge of medical science to alleviating suffering of their patients caused by disease and injury. In negotiating the doctor-patient relationship, they may face tough ethical dilemmas that are sometimes also human rights issues, like decisions concerning the right to privacy or nondiscrimination. Tragically, the neglect of human rights norms by members of the medical profession has led to their participation in egregious violations of human rights, such as performing medical experiments on human subjects without their consent, or ensuring that torture does not result in death until the victim reveals information. These abuses of medical ethics have been prohibited by human rights texts such as the Nuremberg Code and UN texts on treatment of detainees. The current trend is to introduce human rights language and patients' rights into the teaching of medical ethics and to expand the concerns of the profession to a broader health promotion model (concern for prevention of disease and promotion of the health of the population as a whole) rather than the biomedical model (intervention to treat a patient). Moreover, doctors have shown a growing interest in international human rights as evidenced by regular features in the Journal of the American Medical Association, the New England Journal of Medicine, and the Lancet. PHR and the FXB Center are circulating a draft declaration on human rights and health practice to a wide range of individuals and associations around the world that attempts to clarify the applicability of human rights norms to the practice of all healing professions.
The second assumption is that H&HR issues are best addressed through the insights of public health, which complements the biomedical model in a vital way by looking at populations and the policies and practices that can alleviate human suffering by stemming the spread of disease and injury-inducing behavior. The H&HR approach principally builds upon the scientific discipline of public health, epidemiology, and especially social epidemiology. Multilevel approaches to understanding social determinants of health, the role of social integration, social cohesion and social networks, and similar concerns of social epidemiology all suggest a human rights context for policies to improve the prospects for vulnerable populations to lead healthy lives. While human rights issues arise in the context of the management of health systems and other approaches to public health, the insights of social epidemiology are particularly valuable to human rights analysis because of its focus on underlying social factors.
The third assumption is that the human right to health is defined as "the right of everyone to the enjoyment of the highest attainable standard of physical and mental health" and that this definition has policy implications regarding availability, affordability, nondiscrimination, participation of the population in determining priorities in health, and appropriateness of the preventive and curative strategies. This standard may require new approaches to both advanced biomedical technology and simpler and cheaper approaches to healing--including traditional modes of healing--and the most rudimentary forms of primary health care. The paradigmatic application of the linkage of H&HR has been in the field of HIV/AIDS, a disease that currently infects 36 million people, with 5 million new cases each year. Nearly half the people infected with HIV/AIDS are women, and most live in sub-Saharan Africa. Initially focused on discrimination against and stigmatization of people with AIDS, advocates of the H&HR approach have succeeded in introducing the standards of informed consent for testing, participation of people living with HIV or AIDS in decision-making concerning policies of treatment and prevention, the right to enhanced care, and the right to information, to name the most obvious elements. The human rights approach to the HIV/AIDS pandemic has achieved a reduction in vulnerability of at-risk populations to infection. The UN guidelines on HIV/AIDS and human rights enumerate no fewer than nineteen human rights as being relevant to HIV/AIDS.
The fourth assumption is that states have specific obligations to respect, protect, promote, and fulfill the right to health. Accountability for compliance with these obligations contributes to reducing vulnerability and increasing well-being. Accountability in this context need not take the form of pointing an accusing finger. Such a confrontational approach can be reserved for a situation in which the irresponsible behavior of the state and other duty-holders is so egregious that it would be unconscionable or counterproductive to remain silent out of sensitivity to governments' claims that criticism of their policies is an illegitimate interference in domestic affairs. In most situations, the appropriate measures for securing government accountability consist of persuasion, technical assistance, dialogue, and emulation. While accountability usually refers to sanctioning an agent of the state for violating rules, the nature of the state's obligations relating to the right to health justifies cooperative means of achieving change through weaker forms of accountability. The important point is to bring about change, and the choice between confrontational and cooperative means depends on circumstances.
These assumptions characterize the approach of scholars, practitioners, and activists who identify with emerging concerns of H&HR. Only in three areas--HIV/AIDS, torture, and reproductive and sexual rights--has there been significant thinking and action using the H&HR approach. The agenda for H&HR can be fruitfully extended to other issues, such as other infectious diseases, advances in biotechnology, violence in society, and political violence. Work is advancing in all these areas, and policies are being redefined to incorporate human rights standards. Joining in this effort has a powerful appeal, expressed well by Jonathan Mann, who said, "It is precisely though this historic effort to explore and promote values in the world for which we share responsibility, articulated in philosophy and in actions, that we express confidence in our own lives, in our community, and in the future of our world."
