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 2

Dr. Banks displayed a lack of respect for his community by being insufficiently up front about his research; the community’s lack of trust was demonstrated by their reluctance to share personal information.

Researchers can incorporate community engaged practices into traditional research projects through the community-based participatory research (CBPR) model. CBPR is:

a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community, has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities [1].

CBPR is a balancing act between two partners with emphasis on community engagement throughout the research process. While researchers must be mindful of fostering community relationships, they must avoid the development of unethical partnerships.

To earn trust, Dr. Banks must be transparent about his intentions to conduct research in his community. He attempted to achieve a level of acceptance by acculturating to his new community, but it isn’t enough for him to just be located within it; the community must be a part of the development of, implementation of, and dissemination of findings from the research.

Had Dr. Banks used community social functions to create awareness of his intentions to conduct CBPR and invited community members to participate in research development, perhaps community concerns or mistrust of researchers would have surfaced. It appears that Dr. Banks got to know the community, but the community did not get to know Dr. Banks as a researcher. The level of community engagement for his study does not satisfy CBPR principles.

For Dr. Banks’ research to be successful, it should benefit the community and not just further his personal research interests. As histories of indigenous communities demonstrate, “outside research teams swooped down from the skies, swarmed all over town, asked nosy questions that were none of their business and then disappeared never to be heard of again” [2]. Dr. Banks doesn’t have to do that. He can overcome his neighbors’ understandable distrust.

He can support programs that will provide practical applications of his research to benefit the community. He can involve community members in the development of research instruments; assure the protection, privacy, and confidentiality of research participants; hire and train community members as interviewers; and secure additional funds or resources to support other community initiatives [3]. He can acknowledge and describe the researcher’s role in the study, obtain the community’s permission to give credit for contributions to manuscripts for publications and study reports to sponsors, and include community members in presentations at professional meetings. If Dr. Banks follows the CBPR approach, he can continue to conduct his research, while serving and collaborating with the community.

Although Dr. Banks’ study received institutional review board (IRB) approval, collaboration with the community was not standard. Its role was limited to that of subject, when it should rightly be a partner. The overall goal of the IRB CBPR ethics review is to ensure the community’s appropriate participation in research, minimize adverse impacts of research, and maximize the potential benefits to individuals and the community as a whole. An additional review to make sure these criteria are met can be carried out by a community advisory board [4]. Human protection concerns in CBPR are not just about the individual, but also inherently about respect for, beneficence toward, and just treatment for the community [5].

Dr. Banks must demonstrate that he is not just conducting another study with no commitment, but undertaking a community-engaged process with mutual benefits. The advantage to the CBPR approach includes Dr. Banks’ ability to contribute scientific research, the community partners’ knowledge of familial aggregation and cultural and historical community dynamics, and an empowering co-learning process that attends to social inequalities.

Using a memorandum of understanding (MOU) would increase the community’s trust. This document establishes decision-making styles; intent to compromise among different philosophies; mutual respect; shared responsibilities; respect for diversity of gender, race, ethnicity, class, age, and so on; preferred language and definitions of terms; and ownership of data. Furthermore, partnerships can dissolve and need to plan a process for closure [6].

The participant screening process must also reflect these priorities. During this process, the researcher determines if potential participants meets eligibility requirements and if they will be compliant with study requirements. In addition to signing a consent form, participants should be given a verbal explanation of all of the elements of informed consent: the purpose of research (in this case, the sensitive nature of the topic), risks, benefits, alternatives, who will have access to the data, a certificate of confidentiality, and so on. The researcher must make sure the participant actually comprehends the study expectations. Participants’ desire for privacy must be respected.

CBPR partners must work together to make sure the research is conducted with the best interests of the community in mind. The research must also be designed with a specific understanding of the community in which it is taking place. Researchers and community partners must establish agreed-upon values and goals and focus on measurable outcomes and accountability to each other. They must treat each other with respect, trust, sincerity, and commitment; make communication and mutual understanding a priority; balance power and share resources; and work to address the needs of all partners.

Is Dr. Banks’ Community Too Small for Such Personal Research

Small towns and communities must be considered for research; they should not be neglected on the basis of population size. But only a very carefully designed study will maintain the confidentiality and de-identification of study participants and not stigmatize or bring harm to the community. CBPR can be successful in small communities if partners practice the principles of good community-campus partnerships.

Terminating the study would be extreme and a disservice to his community. However, if Dr. Banks redesigns the study and integrates the principles and ethics of CBPR, he can fulfill his research objectives and meet the community’s needs without being estranged from it.