Human Subjects Protection

Every evaluation, in one way or another, involves collecting information from people—by observation, [Page 189]interviews, surveys, tests, existing documents, and records. Ethical evaluators need to take precautions to ensure that the rights of the people from whom they collect data are protected. These rights include, but are not limited to, the right to privacy, the right to confidentiality, and the right to choose whether to participate in a study without penalty and with an understanding of the benefits and risks.

Concern for the protection of human subjects first received prominent attention in the 1970s. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research held hearings and published The Belmont Report, which brought attention to some of the abuses of human subjects in social science research. In 1974, the Department of Health and Human Services established procedures for the review of research involving human subjects. The National Research Act (Public Law 93–348) established Institutional Review Boards (IRBs) within universities and other organizations conducting research to review procedures used in research involving human subjects. Today, 17 federal agencies make use of these federal regulations, and undergoing an IRB review is common practice in university settings. Other laws, such as the Buckley Amendment, have also established guidelines to regulate the use of data.

Although these federal regulations provide some protection for human subjects, their focus is primarily on research. Many evaluations may not make use of an IRB process for a variety of reasons—it may not be required by the funder, the agency may not have established an IRB, or the nature of the data collection may exempt the evaluation from formal IRB review. Further, although review by an IRB can be helpful in protecting the rights of human subjects, federal regulations do not cover all areas pertinent to evaluation, and members of IRBs may not be sufficiently sensitive to the nature of evaluation methods and the environment in which it is practiced to recognize all threats. Thus the ultimate responsibility for the protection of the rights of human subjects lies with the evaluator.

Protecting the rights of human subjects plays a prominent role in the two major ethical documents guiding evaluators, the Guiding Principles for Evaluators and the Program Evaluation Standards. Respect for people is one of the five guiding principles of the American Evaluation Association. This principle notes evaluators' obligation to “respect the security, dignity and self-worth of the respondents, program participants, clients, and other stakeholders with whom they interact.” Respect for people includes concerns regarding informed consent and confidentiality, as well as maximizing benefits, minimizing harm, and being sensitive to subjects' cultural differences. Rights of human subjects is one of the Proprietary Standards defined by the Joint Committee: “Evaluations should be designed and conducted to respect and protect the rights and welfare of human subjects.”

Human subjects protection in evaluation studies entails different complexities and concerns than that facing the typical social science researcher. The Belmont Report identifies three principles evaluators can use in considering these protections: beneficence, respect, and justice. Beneficence prompts the evaluator to avoid unnecessary harm and to strive to obtain good outcomes for participants and society as a whole. Respect reminds the evaluator to protect the autonomy of individuals taking part in the evaluation so that they may choose to participate in an informed and free manner. The principle of justice encourages the evaluator to protect and defend the equitable treatment and representation of different groups in both the evaluation and the program. These principles influenced the development of evaluation codes of conduct and are useful in considering ways to protect human subjects in the context of evaluation work.

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