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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America
pants in research incorporating participant anonymity or investigator blinding. At minimum, investigators could supply to all prospective participants information on available health and social services for families and older persons. Research findings on the risk and prevalence of elder abuse and neglect in particular areas could also be shared with local protective services agencies and government officials, with the aim of increasing awareness of and services for at-risk individuals. Moreover, researchers should consider whether ethical principles would in some cases support alternatives to anonymity and blinding, alternatives such as “a thorough, thoughtful, nondeceptive, informed consent process in an ongoing research relationship, and a commitment to honor confidentiality unless grave harm appears imminent.” (King and Churchill, 2000:722).
Conflicts Regarding Information Disclosure
The second major conflict pits the interests of participants in being informed of research risks against societal interests in advancing knowledge. Sometimes withholding information from prospective participants would allow investigators to collect the most accurate data. Two such situations may arise. One occurs when investigators studying relatives or professional caregivers plan to report or take other actions if a research team member comes to suspect elder abuse or neglect. In this case, the concern is that prospective participants aware of the investigators’ plans will either refuse to enroll or if they do enroll, will provide inaccurate information. The other situation occurs when investigators are studying older persons. Here, the fear is that if investigators tell prospective participants (or their representatives) about plans to address suspected abuse or neglect, individuals opposed to protective interventions will refuse to enroll or, if they do enroll, will provide inaccurate information.
As indicated above, disclosure in both situations will often be required. The Common Rule permits exceptions to disclosure only when research presents no more than minimal risk to participants and when disclosure would make research impracticable. Underlying the narrowness of the exception is the ethical judgment that potential knowledge gains fail to justify depriving individuals of the freedom to refuse participation in research that exposes them to risks greater than those encountered in everyday life and routine health and social services practice (Beauchamp, 1996). Although failure to disclose reporting plans may be justified in clinical and social services programs designed to assist specific older persons, current policy deems such concealment unacceptable when data are collected for the purpose of advancing knowledge.
Current policy also recognizes that an investigator’s failure to disclose plans for addressing suspicions of neglect and abuse could have negative