long-term consequences for research, as well as the health care and social services systems. This is because research participants and community members who learn of the failure to disclose could lose trust in researchers, clinicians, and social workers (Bok, 1992).

At the same time, it should be recognized that the current policy requirements for disclosure could have negative consequences. The price of disclosure is a possible loss of societal benefits. This loss could occur if the disclosure requirements limit researchers’ abilities to assess and understand the problem of elder abuse and neglect. Whether this occurs will depend in part on whether researchers are able to devise methods that avoid or compensate for possible underreporting and other problems related to the disclosure requirements.

The research ethics literature fails to address information disclosure in the specific context of research on elder abuse and neglect. This topic has been covered, however, in articles examining research on other forms of harmful behavior. Discussions of the ethics of research on child abuse and neglect generally support disclosure of investigators’ plans to address suspected misconduct. For example, psychologist Celia Fisher argues for disclosure of all risks that could affect a child’s and parent’s willingness to enroll, including the possibility that suspected abuse will be reported (Fisher, 1999).

In the LONGSCAN studies of child abuse and neglect, investigators and reviewing IRBs favored disclosure as well. In these studies, parents, as well as children aged eight and older, are told that investigators will take various measures in response to suspected maltreatment, including reporting potentially serious harm to authorities. Parents also are given the option to review the questions their children will be asked. This represents a decision to give children and parents control over the information they provide, even though this may bias study results (Runyan, 1999). Study teams and IRBs in different LONGSCAN projects adopted different language to disclose reporting plans, however, with some disclosures more explicit than others. The language differences reflected differences in study responses to suspected abuse and neglect, which were discussed above.

A similar approach was adopted in the MacArthur Risk Assessment study of risk factors for community violence in former mental patients. In study consent forms, prospective participants were told that confidentiality would be preserved unless researchers believed the lives of participants or third parties were in danger or child abuse was discovered (Monahan et al., 1993). Thus, individuals had the option to refuse participation or to modify their response to investigators based on their awareness that reporting was possible.

In sum, if research participation will expose older persons or caregivers to risks greater than those present in ordinary encounters with health and

The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement