AMA Journal of Ethics^®

Case

Dr. Banks moved to the mixed-income neighborhood where he also works at the Dunlap Community Health Center. Outside of the clinic, he serves as a member of the neighborhood association and is getting to know many of his neighbors, little by little, through the association and potlucks and chance meetings in the grocery store. At the clinic, he’s asked to be part of a community-based participatory research project to study “Safe Sex Practices in Dunlap, Zone 4,” a topic he’s long been interested in exploring. He anticipates that recruitment will go fairly easily since he has begun to build relationships within the community. When recruitment begins, he notices that he is getting strange looks from his neighbors, and his relationships with them are starting to appear strained.

After a couple of weeks of low recruitment numbers, Dr. Banks decides to offer an incentive. Quite a few people from the neighborhood consent to participate after word spreads of the grocery store gift card given upon completion of the 1-hour interview. His first several groups of participants are neighbors on his block, some of whom are married. Each interview is more difficult than the one before it, and he finds that he is left with little data after each.

After a few more unsuccessful interviews, Dr. Banks brings the matter up with his colleagues and community members. One whom he really trusts says, “Dr. Banks, you have to choose. Be a neighbor or be a physician-researcher. No one will open up to you as long as you are both. People feel that you might share whatever you learn about individuals with other neighbors.”

“But it was clear on the consent form that no data on individuals would be released,” Dr. Banks says.

“That’s all fine,” says his colleague, “But people don’t trust you with their personal information. They don’t want you to know.”

Dr. Banks feels pulled in two directions. He doesn’t think that data he’s collected so far will be at all helpful. He really cares about the work he’s doing and wonders if there is a way to exist in both worlds.

Commentary 1

Dr. Banks wants to improve the health of his community, reduce health disparities, contribute to scientific knowledge, and advance his career. As a physician-researcher, he hopes to do all of these through his personal clinical services at the Dunlap Community Health Center and community-based participatory research on the health challenges of his community. By moving into the neighborhood, going to potlucks, and getting to know the community, he has done all the right things to start a practice in community-based primary care and projects in community-based participatory research [1].

Physician, Researcher, or Neighbor?

The problem Dr. Banks faces now is one of role confusion [2]. As he was told, “Be a neighbor or be a physician-researcher. No one will open up to you as long as you are both.” The social rules of neighborly interaction vary from one community to the next, but generally include knowing each others’ spouses and children and may include school, church, or other community activities. At the same time, there’s an implicit understanding of respect for privacy: the role of neighbor is not easily compatible with knowledge of the sexual activities of everyone on the block.

In addition to the conflict between neighbor and researcher, Dr. Banks also faces a conflict between his roles as neighbor and physician, and another between his roles as physician and researcher [3]. Physicians working in close-knit communities, whether small towns or urban neighborhoods, have to manage relationships with people who may be simultaneously patients and neighbors, friends, and business associates. Managing these multiple roles to protect confidentiality and trust and avoid exploitation or misunderstanding requires balancing responsibilities and careful communication [4]. The intertwining of personal and professional relationships may sometimes require the physician to hold himself or herself apart from highly charged social interactions [5], particularly dating and sexual relationships, which are often most prone to miscommunication for both patients and physicians [6]. This may be particularly challenging for the physician who is unattached and has to decide whether to date within or only outside of the community.

“Are you my doctor or are you a researcher?” Are you advocating for the individual patients in the study, for scientific truth, for the pharmaceutical company or agency paying for the research, or for something else? These conflicts between loyalty to research participants and other stakeholders are often more apparent to community partners than they are to the researchers themselves. I have sat in research planning meetings in both the U.S. and Africa in which community members initiated explicit discussions of the incentives for researchers, asking about who was paying for research, what questions are being asked, who chose those questions and why, and what was the value to the individual researchers of doing and publishing the research in terms of their careers. These women—and they were all women, usually teachers or nurses professionally—representing themselves and their communities, brought with them a more sophisticated awareness of the history of relationships between poor communities and researchers [7, 8] than the researchers themselves often did.

In Philadelphia, for instance, there is widespread community awareness of dermatologic and pharmaceutical research conducted at Holmesburg Prison that left many men with severe burn-like scars, and generated new products like Retin-A for acne [9]. Researchers, most of whom were raised or trained elsewhere because of the social dynamics of academic careers, do not learn of this community history from their fellow researchers and mentors, nor from their local neighbors. Community representatives frequently argue that researchers have been studying their communities for decades without either finding practical solutions to the health problems at hand—such as studies of diabetes in Native American communities [10-12]—or helping the communities gain access to health care, including the benefits of both the research in question and prior community-based research [13]. What is remarkable is not that the community representatives so often advance the critique that, due to structural injustice in access to health care, research benefits the researchers but neither the participants nor their communities, but that this criticism is always a surprise to the researchers. Seeing research as an intrinsic and communal good, researchers often fail to consider how the benefits of research reach—or do not reach—community members [14].

Community-Based Participatory Research for Health: What Can Dr. Banks Do?

Dr. Banks has worked hard to be accepted as an insider in Dunlap, a neighbor and a physician, and now wants to participate in community-based participatory research (CBPR) to improve the health of the community. The case description does not include a discussion of the origins of the study “Safe Sex Practices in Dunlap, Zone 4;” who planned it, and why.

Most important, who represents the community? What is the structure of Dunlap, demographically, economically, socially? These questions are essential to beginning any CBPR project because, especially in communities—usually economically disadvantaged and often ethnically diverse or composed primarily of members of historically discriminated-against ethnic groups—that face substantial health disadvantages, community leaders need to be identified and legitimate in the eyes of community members [15]. Balance may be necessary between groups to ensure representation and attention to issues which may affect one segment of a community more than others—as in U.S. cities where I have worked with both African American and Latino communities—and longitudinal relationships of trust and equality are essential to continuing collaboration between researchers and communities.

Next, who decided that sex was a good first topic for a new CBPR collaboration? Safer sex may be an important issue epidemiologically in Dunlap, as it would be in nearly any community, but CBPR principles require community participation in the selection of research topics, the choices of methodology, and the interpretation of results. While safer sex may be a topic this CBPR collaboration could handle as a second or third project, once trust has grown and research protocols are more developed, it’s probably too sensitive a topic for the first project unless the community itself identifies it as its most pressing health problem (as some communities indeed would have).

If the CBPR collaboration decides in the future to take up safer sex, Dr. Banks’ status as an insider, as well as the value of his time as a clinician, suggest that they should probably consider the use of “outsider” professionals to serve as the interviewers, selected by both the local health experts such as Dr. Banks and the community partners, to increase protection of confidentiality. Failure to consider interviewer effects in sexuality research has been a confounding factor since the famous Kinsey studies of the 1940s, in which both male and female respondents were initially interviewed face-to-face by the same middle-aged male researcher, perhaps contributing to apparent underreporting of female respondents’ admitted sexual activity and exaggeration of the responses of male subjects [16, 17].

Dr. Banks has several choices, all familiar to researchers in CBPR, sexuality research, and social science research more broadly. The work of building trust with a community is ongoing, and whether as a researcher or neighbor, asking about sex at the potluck is probably unwise. He can facilitate community health, participate in CBPR, and maintain his status as an insider in his community, but only if he acknowledges the conflicts inherent in these roles, and decides deliberately which specific activities would benefit from his direct participation, and which roles are best filled by others.