Ethical Issues in Research with Hispanic Drug Users: Participant Perspectives On Risks and Benefits

Summary

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There has been considerable discussion in the research ethics literature concerning special researcher responsibilities in studying vulnerable populations, including whether or not drug addicts, as a result of their health condition and craving for drugs, constitute a vulnerable group from a human subject perspective. In the assessment of ethical issues, researchers in recent years have begun to recognize the critical importance of hearing the subject's voice and learning the concerns and attitudes of those who participate in research. To date, however, despite a significant increase in studies of not-in-treatment drug users, little attempt has been made to determine the perspectives of drug users about participation in research, especially ethnic minority drug users, and in particular, Hispanic drug users. Based on recent findings of a study of drug user attitudes and perspectives on research, this paper reports on the perceived risks and benefits of participation in research of a subsample of Hispanic street drug users from Hartford, Connecticut

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Ethical Issues in Research with Hispanic Drug Users: Participant Perspectives On Risks and Benefits

INTRODUCTION

Pervasive inequalities, cultural differences, and significant dissimilarities in experience separate researchers from research subjects (Gold 2003; Hoeyer, Dahlager, & Lynöe, 2005; Marshall, 2005; Turner, 2005). These distinctions raise important questions about how issues like communication, trust, inclusion, and coercion impact research relationships, the quality of data collection, and the consequences of involvement in research on study participants and their respective communities (Alvidrez & Arean, 2002; Armstrong, Crum, Rieger, Bennett, & Edwards, 1999; Freimuth et al., 2001 ; Molyneux, Peshu, & Marsh, 2005). While researchers have been active in the discussion of these issues, as Molyneux et al. (2005, p. 443) emphasize, "The voices of the people likely to be the subjects of research have been notably absent from the debate." Only in recent years have researchers begun to examine the views, attitudes, and concerns of prospective participants toward involvement in research (Brody, Gluck, & Aragon, 1997; Fisher, 2002; Fisher & Fyrberg, 1994; Fisher, Higgins-D'Allesandro, Rau, Kuther, & Belanger, 1996; Fisher & Wallace, 2000; Roberts, Warner, & Brody, 2000; Sugarman et al., 1998). While progress has been made in the inclusion of participant perspectives in research on cancer, aging, and several other health-related issues, much of this research has focused on White middle class participants. To the degree that ethnic minorities have been included in such research, the emphasis has been on assessing the attitudes toward and understandings of research among African Americans (most notably in light of the Tuskegee syphilis study), with relatively little examination of perspectives on research participation among Hispanics (Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999; Napoles-Springer et al., 2002; Robinson, Ashley, & Haynes, 1996; Sengupta et al., 2000).

While research on drug use began during the 1930s, efforts were limited until the 1960s and 1970s, and it was only with a significant rise in funding in the late 1980s and early 1990s, primarily as...

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