NIH GRANT TO FUND GSSWSR PROF'S STUDY OF RESEARCH ETHICS

A lot of community-based research depends on street-level research workers who belong to the communities being studied, says Professor of Social Work and Social Research Leslie Alexander. Their status as insiders gives such workers access to information from vulnerable research participants the typical graduate-student assistant might not be able to reach, but it also exposes them to ethical challenges that outsiders are unlikely to face. How do research workers make decisions about ethics when their human subjects are neighbors, friends of friends, or the parents of their own children's schoolmates?

According to Alexander, the question has scarcely been asked. "This is a very important group of research workers that hasn't really been studied," she says. With an R01 grant from the National Institutes of Health, Alexander will lead an effort to begin filling that gap in knowledge about how community-based research is conducted. Her two-year study, titled "Research Extenders and Research Integrity: A New Frontier," will receive $199,608 in NIH funding for its first year. Alexander will serve as principal investigator along with co-principal investigator Kenneth Richman, a bioethicist and associate professor at the Massachusetts College of Pharmacy and Health Sciences in Boston. Anthropologist Gala True and public-health researcher Kay Armstrong will round out the team.

Richman, who previously taught at Bryn Mawr, collaborated with Alexander last year on a Web-based ethics training project for community-based researchers, funded by the Office of Research Integrity (ORI) of the Department of Health and Human Services. Their training is posted on the Bryn Mawr College Web site and is also distributed on the Web by ORI.

Alexander and her team call the lay research workers who are the subjects of their study "research extenders." They define them as "persons who are employed by investigators because they share characteristics with the targeted research population and can thus be effective or even essential in recruiting and developing rapport with research participants."

"Lay researchers who are indigenous to the communities they study can collect data from populations that are often hidden, hard to reach, or distrustful of outsiders," Alexander explains. "They may be gathering data on very sensitive topics such as drug use, HIV/AIDS status or domestic violence. Because they have ties to the communities where they're gathering data, they can be put into awkward situations with regard to following research protocols."

"Academics don't usually know the people they research or see them every day," she says. "But a research extender is much more likely to run into someone she or he has interviewed walking down the street or in line at the grocery store. This can raise issues in human-subjects protections, including social risk for research subjects, difficulty maintaining confidentiality, and challenges to maintaining appropriateness in relationships. We'll be looking at how research extenders cope with these issues, what sorts of ethical dilemmas they face, and how they decide on ways to resolve them."

The study will use qualitative methods, including interviews and focus groups, to study research extenders who work for a variety of agencies in the Delaware Valley. "It's been very difficult to get funding for qualitative research," Alexander says, "so we're especially excited about this opportunity."

Alexander says the team hopes to interview about 60 people. They hope to determine whether research extenders' understanding of the responsible conduct of research differs substantially from the regulations and guidance documents developed by academic researchers. Another research topic will be the difference between research extenders who serve the single function of collecting data and those whose work responsibilities combine research activities with the provision of services.

Separate focus groups will be held with each type of research extender and with people who supervise them. They will concentrate on how research extenders are trained in human-subjects ethics, what kinds of training are most effective, and how supervisors make judgments about the validity of research findings in situations where protocols might have been compromised.

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