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Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America
private and when access to private information would enable investigators to identify individuals.
RESPECT FOR PERSONS IN RESEARCH ON ELDER ABUSE AND NEGLECT
The Belmont Report’s principle of respect for persons expresses the moral judgment that no one should be used in research purely as a means to benefit others. In essence, the principle gives protection of individual rights and welfare priority over any medical or social benefits research might generate.
The Belmont Report describes two elements of the principle of respect for persons. The first element is that individuals capable of autonomous decision making should be permitted to make their own choices about whether to participate in research. To enable individuals to make autonomous choices, investigators must disclose important facts about a study, ensure that prospective participants understand that information, and ensure that decisions to enroll are not a response to undue pressures or incentives.
The second element of the principle is that individuals with impaired decision making capacities should be protected from harm in the research process. This dimension of the principle is reflected in legal requirements preventing investigators from enrolling decisionally incapable individuals in research without the informed consent of a family member or other appropriate person. Adequate protection may also require investigators to exclude decisionally incapable individuals from certain risky or burdensome studies that are permissible when conducted with capable, consenting individuals.
Standards and Procedures for Evaluating Decisional Capacity
Central to applying the principle of respect for persons is the determination of whether a prospective research participant can make autonomous decisions about study participation. Because capacity determinations have significant moral implications, evaluators must strive to avoid erroneous classifications. Treating a decisionally capable person as incapable leads to a demeaning and unjustified deprivation of that person’s right to decide whether research participation would be consistent with his or her particular values and preferences. Treating a decisionally incapable person as capable exposes that person to exploitation to advance the interests of those who benefit from the research enterprise.
In research on elder abuse and neglect, both types of errors can have serious consequences. Delegating research decision-making authority to