social services personnel, both research policy and ethics support disclosure of such risks. Balancing the goals of advancing knowledge, respecting informed decision making, and protecting research participants from harm will never be easy. The investigator’s overriding ethical obligation is to detect and evaluate potential conflicts in the initial phase of study planning. The appropriate ways to address conflicts will vary depending on the specific characteristics of the study. Often, there will be more than one ethically defensible option. What is most important is to develop approaches that are supported by a reasonable ethical analysis.
The Belmont Report principles and Common Rule requirements supply guidance on the appropriate conduct of research on elder abuse and neglect. Yet these principles and regulations are by necessity somewhat general. Every human research proposal presents its own issues; thus, careful deliberation by research teams, IRBs, and funding agency officials will always be essential.
These deliberations could be enriched by the views of people familiar with the actual situations of older persons, their families, and their caregivers. Since the Belmont Report and Common Rule were written, community consultation and representation have emerged as methods for making research more ethical. Indeed, the NBAC specifically advised that representatives of prospective research participants, including those from vulnerable populations, “should be encouraged to participate in the study design and oversight processes” (2001:91). By seeking information from members of the population of prospective research participants, investigators may learn of better ways to balance competing interests in their studies. As Celia Fisher and her colleagues have shown, people affected by research may have unexpected beliefs and attitudes about researchers’ responsibilities to participants.
Elder abuse and neglect research seems especially suited to this approach. Several writers have endorsed the involvement of a panel of residents and others who will be affected by research to review proposals to conduct research in nursing homes (Sachs et al., 1993). This concept could be extended to support other forms of community involvement in research on elder abuse and neglect. Members of the relevant communities could help investigators determine the facts that should be disclosed to prospective research participants and create effective methods for conveying the information. They could help researchers discern the appropriate balance between protecting participants’ privacy and preventing harm to vulnerable older persons. They could join researchers and social services workers in