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Ethical Challenges

5. Current and Unresolved Issues

Consent

Individual and/or Community Consent

Today, research is seen as a collaborative partnership between investigators, participants and their institutions. Implementation of the principle of respect for persons has come to include engaging communities in research and negotiating community consent. In today’s environment, it is considered good practice to have community involvement during every phase of research from planning to reporting.  However, who is the community?  Communities differ in their organization and cultural traditions. When an investigator is studying a community or group rather than the individual, who shall consent for the group?  Is group and individual consent appropriate? Is it more effective to discuss research and answer questions in an individual or group setting?

Example 3


Research with Native Americans may require tribal as well as individual consent. Researchers had discussed a potential research project on diet, exercise and aging with tribal leaders. The tribal council suggested a listening circle to discuss the research with tribal elders. Tribal elders asked how the research would benefit their tribe and made it clear that benefit was a condition of their participation. Discussion focused on obesity-related diseases that are common among tribal members. The researchers indicated that they could not promise benefit and if there were some benefit resulting from the research, it would likely be in the future and not accrue to research participants. The tribal elders explained that their perception of benefit means it should be within seven generations. They recommended that the research proceed.