Situation

Clean Analysis, Inc., a research company headed by a sociologist, Theo Gouraki, has a contract with a state agency to evaluate a large-scale program that provides in-home assistance services to persons with disabilities. The project involves merging administrative data from the service providers with information collected from the persons receiving the services. To evaluate the service providers, Clear Analysis staff visit the homes of those receiving services to interview the program participants and to evaluate the service delivery on-site. Before beginning the project, Theo sent provided a significant amount of training to his staff in how to interview persons who have disabilities that might make it difficult to interview them. He also researched thoroughly any possible problems that might lead to the participants having difficulty providing informed consent. When the researchers went to the homes, they found that very few participants refused the visits and the interviews. They also determined that most participants were very reluctant to say that there was anything wrong with their services because they were afraid the service provider would be fired or they might lose their services.

Questions

1. Most research projects have a significant portion of possible participants who are not willing to cooperate. Should Theo have assumed there was a problem when almost everyone agreed to participate?
2. Is it possible that the informed consent procedures contained some information that caused participants to fear that they would lose their services if they did not participate?
3. Should Theo have reviewed his training to determine if there was something in the training that caused the interviewers to be too aggressive and perhaps intimidating when contacting the program participants?
4. Should Theo have asked the participants if they agreed to have their survey data merged with their administrative records?

Discussion

Research on vulnerable populations requires the researcher to take special care to plan and conduct research. Theo obviously prepared himself and his staff well to meet the needs of the population. At the same time, the high level of cooperation should have indicated to Theo that there might be problems that made the participants believe they could not choose to participate in the study. For example, the informed consent statement saying the study was funded by the state agency who provided the services might have intimidated the participants if it was not accompanied by a statement that no services would be lost because of participation and that the research was aimed at evaluating the entire program, not just the services the participant was receiving.

Suppose one of the goals of the research was to determine which services are most cost-effective so the state can focus its funding where it will do the most good. In that case, some participants might lose services as a result of the research. Did Theo have an obligation to tell the respondents about that possible outcome? If he did, would it affect the responses provided by the participants.

Research on vulnerable populations who are more vulnerable because of services provided to them must be planned and conducted with significant care.

No, Theo should not have assumed there was a problem when most of the participants agreed to participate. Agreeing to be interviewed does not necessarily mean there