Ethical Research Encompasses Feedback from Community
April 1, 2025
By Stacey Kusterbeck
Study investigators increasingly feel an obligation to obtain input from community members to ensure ethical research. “The standards for research with humans have evolved considerably over time. People are no longer considered to be the ‘subjects’ of research but are now frequently engaged as ‘participants.’ A degree of reciprocity is expected,” says Stacey Page, PhD, chair of the Conjoint Health Research Ethics Board at University of Calgary’s Cumming School of Medicine.
Some researchers are obtaining feedback from patients or advisory groups to inform their study protocols. In research that focused on defined communities (such as indigenous populations), researchers may engage with community leaders to learn how to best invite people to take part in the research study or how best to collect data. “The development of these relationships fosters trust, respect, and agency,” says Page.
Failing to engage respectfully and proactively with communities runs the risk of alienating people, or worse, exploiting them. “Respecting community input will help to enhance the quality of the data collected where community knowledge, values, preferences, and priorities are acknowledged and incorporated. Adherence to a community’s cultural protocols demonstrates respect, which is congruent with research ethics norms,” says Page.
Engagement with the community should not be limited to the design phase of research but should carry through the life cycle of the research, according to Page. Communities should be engaged in decisions about data management, including ownership access and use, for example. “However, it takes time to establish relationships and build trust,” acknowledges Page.
Researchers may incorporate financial compensation for study participants into the protocol. “But it is not a situation where researchers should simply buy their way in to do whatever they want,” says Page. “There is an obligation on researchers to learn about community norms, respect community preferences and practices, and leave communities in some way the better for their efforts.”
By engaging with the community during the study design process, researchers ensure that the research is of value to the population. “This can come from data and literature reviews. But sometimes, engaging the community helps explain the need,” says Barbara DeCausey, MPH, MBA, senior director of Integrity and Human Research at Virginia Tech’s Human Research Protection Program. Community engagement can help with recruitment and retention. “Giving the community the opportunity to be involved gives them a sense of ownership. They may be more likely to participate and encourage others to do the same,” says DeCausey.
It also gives researchers the opportunity to obtain feedback that may lead to fewer protocol amendments later in the process. “Involving the community from the beginning might take some time, but it may save the research team more time in the end,” says DeCausey. Based on feedback from the community members, researchers might take these actions:
- Make changes to their recruitment strategies and materials.
- Improve the consent process and consent form.
- Make changes to questionnaires, surveys, or other data collection instruments so they are easier to understand and will capture the data that are needed.
Researchers might discover that the clinical trial is not a good fit for the community or that the community will not benefit from the research. For example, a researcher may want to conduct a study that evaluates the effect of increasing the consumption of fresh produce on overall health. The study is conducted in a food desert, so the research team supplies participants with fresh produce during the study. The participants will benefit while they are participating in the study, but after the study is complete, they no longer have access to fresh produce. Researchers could provide clinical trial participants with the results of the study so they can advocate for access to fresh produce in their community. Researchers also might decide, instead, to conduct the study in an area where there is access to fresh produce, but in limited quantities. In this case, the research might result in increased availability of these foods.
“The community should benefit from the research. Otherwise, it may be viewed as unethical,” underscores DeCausey.
For researchers, it can be challenging to connect with the right individuals to help engage the community in conversations. “Members of the community may be wary of research and not be willing to trust and engage with the research team,” says DeCausey. Researchers can get in touch with community leaders through community organizations. These individuals should be approached early in the process, so they can work with the research team to identify other community members to be involved. “The team of community members should be involved as early as possible, to avoid developing strategies that are not feasible,” advises DeCausey.
Study investigators increasingly feel an obligation to obtain input from community members to ensure ethical research. Failing to engage respectfully and proactively with communities runs the risk of alienating people, or worse, exploiting them.
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