Partnerships to address ethical challenges in environmental health. (NIEHS Extramural Update).

Research endeavors that lead to methods for prevention and treatment of disease are a primary goal of the NIEHS. With the increased impact of genetic research on human health comes a growing awareness of the ethical, legal, and social issues related to the involvement of human subjects. To address this need, the NIEHS has created a new program, Partnerships to Address Ethical Challenges in Environmental Health. The goal of this program is to enhance public participation in research and create a more informed and educated public.

Involvement of the public in research programs is an essential component of preventing and minimizing adverse health effects. Public health research involves the active participation of individuals, the public (including, for example, community-based organizations; lawyers, policy makers, health care professionals, health maintenance organizations, and departments of health), and the research community alike to help understand the progression of disease, people's exposures, and susceptibilities. However, researchers and public health professionals are increasingly faced with problems such as recruitment and retention of participants, consent, and confidentiality issues. These problems are further exacerbated by the public's lack of knowledge about research studies and scientists' lack of understanding of challenges facing the community.

To address these challenges, the NIEHS, in partnership with the National Human Genome Research Institute (NHGRI), developed Partnerships to Address Ethical Challenges in Environmental Health as an extension of the Environmental Justice and Environmental Genome Programs. The goal is to develop a comprehensive program of education addressing ethical, legal, and social concerns of the public in research endeavors related to gene-environment interactions, environmental health hazards, and disease susceptibility.

As a result of a recent request for applications, the NIEHS and the NHGRI jointly are supporting nine projects covering a broad array of ethical, legal, and social issues related to environmental and gene-environment research in the community. Issues covered in these grants include the process of informed consent, confidentiality, access to information on research and environmental pollutants, equality of partnerships, researchers' ethics in community research (beneficence), community and scientist involvement in the development of study and methodology design, findings disseminated with limited or no follow-up, gaps in the communication of information, the role of community advisory boards, conflict of ethics (doctors, nurses, administrators, researchers, and the community), and cultural issues in research.

For more information | http://www.niehs.nih.gov/translat/inits.htm Contact | Shobha Srinivasan, e-mail: [e-mail]