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.

This research was supported in part by grants from the National Institutes of Mental Health (MH49467 and MH58386), Justice (86-IJ-CX-0033 and 89-IJ-CX-0007), Drug Abuse (DA017842) and Child Health and Human Development (HD40774). Points of view are those of the authors and do not reflect the position of the U.S. Department of Justice. The authors appreciate the helpful comments of reviewers of an earlier draft of this manuscript.

Notes

This research was supported in part by grants from the National Institutes of Mental Health (MH49467 and MH58386), Justice (86-IJ-CX-0033 and 89-IJ-CX-0007), Drug Abuse (DA017842) and Child Health and Human Development (HD40774). Points of view are those of the authors and do not reflect the position of the U.S. Department of Justice. The authors appreciate the helpful comments of reviewers of an earlier draft of this manuscript.

¹In a section of the consent form labeled "Potential Risks or Inconveniences and Potential Benefits," participants were told:

We do not expect that you will benefit from this study. However, your participation in this study may help others in the future by helping us better understand the way young adults develop and function across a number of aspects of life and feelings. There are some risks associated with the study. Some people may feel uncomfortable or sad when answering some of the questions. Our interviewers are trained to help if that happens, and they can give you a list of telephone numbers of services that are available to help people when they have different kinds of problems. Some people may feel slight pain when having a finger pricked, but our interviewers are trained to use clean, new materials and to dispose of waste properly.

Widom, C. S., Dutton, M. A., Czaja, S. J., and Dumont, K. (in press). The Development and Validation of a New Instrument to Assess Lifetime Trauma and Victimization History. Journal of Traumatic Stress