Ethics in Environmental Health
Adler, Tina, Environmental Health Perspectives
When it comes to the ethics of health research, "there's been a presumption that ethicists and ethics committees will be in charge and solve ethical problems," says Ann Cook, director of the National Rural Bioethics Project at the University of Montana in Missoula. More and more, however, environmental health researchers are realizing their need to be directly involved in the ethics questions facing them and their community partners.
Cook describes ethics as "something that everyone in the community has a stake in and needs to know about." The NIEHS and the National Human Genome Research Institute agree. In 2002 the two institutes launched a grants program called Partnerships to Address Ethical Challenges in Environmental Health, which aims to tackle these issues by promoting community-researcher collaborations.
As part of the larger NIEHS Environmental Justice Program framework, the Partnerships program seeks to remedy the unequal burden borne by socioeconomically disadvantaged persons in terms of residential exposure to greater-than-acceptable levels of environmental pollution, occupational exposure to hazardous substances, and fewer civic benefits such as sewage and water treatment. Chief among ethical concerns for such populations is ensuring that research studies are designed and conducted with the involvement of those being studied rather than regarding them simply as study subjects.
Program grantees, including Cook's team, receive up to $200,000 annually for five years to investigate environmental ills in a community, survey residents' attitudes about both local environmental problems and health studies in general, and develop educational campaigns to meet local needs. Grantee teams must include an environmental health scientist, a social scientist or expert on issues such as racial, ethnic, or socioeconomic discrimination, and a representative from a local community organization that works on environmental issues.
A variety of groups, from environmental organizations to schools of public health, receive funding through the Partnerships program. Grantees are now halfway through their projects and ready to discuss some of their findings--and frustrations.
In an effort to develop a series of models for carrying out effective community review of environmental health research, Peggy Shephard, executive director of West Harlem Environmental Action (WE ACT) in New York City, and her colleagues have been listening in on NIH panel discussions between researchers and their community partners. Shephard's team has also conducted a series of interviews and focus groups with environmental health researchers and their long-term community partners about the workings of such relationships.
One of WE ACT's preliminary findings is that "we need to stop using the word 'community,'" says Shephard. The word is repeated so often and in so many contexts that it's becoming meaningless, she says. In part because "community" has no clear definition among researchers, "we're coming to the viewpoint that there is never real 'community consent' for research," she says. For example, she asks, is consent achieved when one community group okays a health study, or only when representatives of multiple community groups endorse it? WE ACT is addressing these and other questions--including how to appropriately define "community"--in an upcoming report.
Ensuring Savvy Study Participants
Researchers at Boston University have rounded up four potentially divergent groups--public health officials, community activists, community residents, and representatives of academe--with the goal of coming to some common understanding of what is involved when scientists embark on a community health study. The team is led by David Ozonoff, an environmental epidemiologist at the Boston University School of Public Health.
What motivated the project, explains project manager and Ozonoff graduate student Madeleine Scammell, is the many calls to university and state health departments across the country from residents concerned about a variety of potential health hazards in their towns. …