title: Reactions to research participation in vulnerable subgroups.
abstract: This paper describes the extent to which vulnerable individuals (defined by economic, social, psychological, physical health, and child maltreatment status) react to research participation. As part of an ongoing longitudinal study, participants (N=896) completed a lengthy and intrusive in-person interview and provided a small amount of blood through finger pricks. At the end of the interview, participants were asked eight questions about their reactions to the research experience. Vulnerable individuals in general agreed more strongly about having an emotional reaction, but were not less willing to continue to participate. In addition, psychologically vulnerable individuals more strongly agreed they would continue to participate, were treated with respect and dignity, and found their participation meaningful. Compared to whites, nonwhites reported stronger agreement about the meaningfulness of the research and the belief that their responses would be kept private. Like others, individuals vulnerable by virtue of their prisoner status or homelessness (past or current) agreed more strongly about having an emotional reaction to the interview, but otherwise did not differ in their reactions. These results suggest that researchers and institutional review boards should not be deterred from conducting research on sensitive topics with potentially vulnerable populations.
authors.affiliation: Department of Psychiatry, New Jersey Medical School, 183 South Orange Avenue, BHSB F1406, Newark, NJ 07103, USA. widomca@umdnj.edu
authors.forename: Cathy Spatz
authors.initials: CS
authors.lastname: Widom
authors.forename: Sally J
authors.initials: SJ
authors.lastname: Czaja
mesh_terms: D000328:Adult; D035841:Behavioral Research; D002648:Child; D002649:Child Abuse; D006233:Persons with Disabilities; D006703:Ill-Housed Persons; D006801:Humans; D007407:Interviews as Topic; D028642:Persons with Psychiatric Disorders; D008913:Minority Groups; D011329:Prisoners; D035842:Research Subjects / Q000523:psychology*; D035862:Vulnerable Populations / Q000523:psychology*