TEACHING ETHICS THROUGHOUT THE CURRICULUM

Case 50. Informed Consent with Vulnerable Populations

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?

     Reflect on the above questions and form your own answers before clicking the Discussion key to review the commentary provided with this case.