Human Rights and the Ethic of Care: A Framework for Health Research and Practice

Abstract

Wide gaps in health status, access to health care, quality of care, and provision of health-related services are increasingly evident in the context of globalization. In the face of glaring disparities between the health status of the "Haves" and that of the "Have Nots," health professionals in wealthier countries must consider the impact of such disparities on the ethical conduct of health research. Unfortunately, currently established codes of moral conduct fail to provide adequate guidance for ethical decision-making in health research. Formal codes include the U.S. Department of Health and Human Services (DHHS) regulations for protection of human subjects, the Nuremberg Code, the Helsinki Declaration, and the guidelines of the Council for International Organizations of Medical Sciences Taken together, these documents constitute a body of important standards for protecting research subjects from harm and regulating the balance between potential risks to subjects and potential benefits. Yet, these standards fail to resolve ethical conflicts between upholding human rights and producing more information for medical benefit. Such conflicts are increasingly apparent as economic globalization reveals the depth of international disparities in resources and knowledge. In this Article, we examine how an ethics based on caring and responsibility can guide clinical research in a manner that is consistent with human rights and justice in the face of global disparities. We review two paradigms for moral reasoning-the morality of rights and the morality of care-with respect to applying the principles of human rights to health. The morality of rights relies on the abstract concept of justice to guide behavior. The morality of care, as the name suggests, seeks to guide decision-making in a way that takes care of others, examining real-world conflicts and contexts to resolve moral dilemmas. As such, it can supplement the abstractions of justice, protection, and benefit to provide ethical guidance in a wide variety of circumstances. We examine how the two moral paradigms play out in a contemporary bioethical challenge-the case of research related to Human Immunodeficiency Virus (HIV) and AIDS in the developing world. Finally, we propose an approach to ethical decision-making for clinical research that we apply to the HIV/AIDS experience, but which we believe has wider applicability. We suggest that incorporation of a morality of care into the approach to health research can deepen the ethical discussion, produce more nuanced strategies for research planning, and identify and reinforce a professional stance that is more responsive to both health disparities and changing needs. A more versatile and caring ethical framework will offer better guidance to researchers and health care providers when faced with complex situations and ever-present disparities in an era of globalized health research.