Protection of Human Subjects of Biomedical and Behavioral Research suggested the following option:
to appoint a social worker, pediatric nurse, or physician to act as surrogate parent when the research is designed, for example, to study neglected or battered children. Such surrogate parents would be expected to participate not only in the process of soliciting the children’s cooperation but also in the conduct of the research, in order to provide reassurance for the subject and to intervene or support their desire to withdraw if participation becomes too stressful (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1975:19).
An analogous approach might be adopted in studies of elder abuse and neglect involving decisionally incapable adults. Major considerations would be whether it would be justifiable or practical to withhold information about the appointment of such a designated surrogate from a close family member suspected of abuse. As two authors addressing the child abuse research regulation noted, “removing the parent’s decision-making authority will not assuage a child’s concerns about the consequences of disclosure, or prevent a parent from vigorously asking a child about what was discussed in interviews . . .” (King and Churchill, 2000:722). Similar concerns could arise in research involving older adults with impaired decisional capacity. Other important considerations would be the study’s potential risks and direct benefits, variables that are addressed in the section on beneficence in research on elder abuse and neglect.4
Decisionally incapable persons ought not be completely excluded from research decision making. According to the Belmont Report, the principle of respect for persons “requires giving [such persons] the opportunity to choose to the extent they are able, whether or not to participate in re-
It appears that the regulatory provision has rarely, if ever, been applied. My review of the literature failed to yield any discussion of the use of a surrogate parent or other alternative to parental or guardian consent in child abuse and neglect research. Moreover, neither an inquiry to the Department of Health and Human Services Office of Human Research Protections nor a request to subscribers to the major IRB listserv produced any reports of studies in which these alternatives were adopted.
One individual did report that his IRB had appointed an independent advocate for child research participants in foster care and other out-of-home placements, based on another provision of the pediatric research regulations that deals with children who are wards of the state or other institutions. The appointments had to be approved by the child’s legal guardian. He noted that they had encountered several problems in determining the appropriate role for the advocate, as well as how to cover the costs of this mechanism.