The Politics of Risk: A Human Rights Paradigm for Children's Environmental Health Research
Ryan, Maura A., Environmental Health Perspectives
A human rights paradigm for environmental health research makes explicit the relationship between poor health and poverty, inequality, and social and political marginalization, and it aims at civic problem solving. In so doing, it incorporates support for community-based, participatory research and takes seriously the social responsibilities of researchers. For these reasons, a human rights approach may be better able than conventional bioethics to address the unique issues that arise in the context of pediatric environmental health research, particularly the place of environmental justice standards in research. At the same time, as illustrated by disagreements over the ethics of research into lead abatement methods, bringing a human rights paradigm to bear in the context of environmental health research requires resolving important tensions at its heart, particularly the inescapable tension between ethical ideals and political realities. Key words: environmental health, environmental policy, ethics, human rights, pediatric research.
The Politics of Risk
Recent debates over the conduct of children's environmental health research have highlighted the importance of integrating environmental justice standards into the design, implementation, and evaluation of research paradigms (Pinder 2002). In addition to acknowledging the different vulnerability of children to the effects of environmental toxicants, environmental justice concerns recognize the structural conditions (e.g., race, income, housing options) that account for differential distribution of environmental health hazards across communities and potentially constrain not only the conditions for informed consent/assent but the prospects for research outcomes to result in health gains for at-risk children. A human rights paradigm for environmental health research takes the relationship between poor health and poverty, inequality, and social and political marginalization as its starting point and aims to develop capacities within communities. For these reasons, a human rights approach may be better equipped than conventional bioethics--which has developed largely within the clinical setting and which has tended to focus on the maximization of individual autonomy--to address the unique issues that arise in the context of public health research and therefore in the context of pediatric environmental health research. At the same time, as a brief look at debates over the ethics of lead abatement studies shows, invoking a human rights framework raises important questions--particularly how to balance practical limits and utopian goals.
Public Health, Ethics, and Human Rights
Callahan and Jennings (2002) identify four characteristics of the setting for public health research that distinguish it from research ethics generally and that lend an affinity to the international human rights discourse that has developed since World War II and currently informs global health initiatives. First, health is considered a public or "common" good. Despite disagreements over the foundation and scope of human rights and the nature of a "right to health," collaborative efforts to improve public health globally presuppose the importance of health for human dignity and human flourishing. In illuminating the links among health, human development, and the environment, environmental health research assumes the importance of a safe environment, not only for individual children but also for sustaining the human species (Landrigan et al. 2004). Public health research is oriented toward informing interventions, reforms, and policies that promote and protect population health. Thus it can be at odds with the general priorities of clinical research, particularly industry-sponsored clinical research, and with the bias of contemporary bioethics toward the promotion of individual autonomy.
Second, because public health measures aim at population health, communities rather than individuals are the primary locus for moral agency. …