Individuals must feel free to exert personal control over decisions regarding research participation. We present an examination of participants’ perceived personal control over, as well as reported pressures and threats from others, influencing their decision to join a study assessing the effectiveness of extended-release naltrexone in preventing opioid dependence relapse. Most participants endorsed a strong sense of control over the decision; few reported pressures or threats. Although few in number, participants’ brief narrative descriptions of the pressures and threats are illuminating and provide context for their perceptions of personal control. Based on this work, we propose a useful set of tools to help ascertain participants’ sense of personal control in joining research.
Richard J. Bonnie & et al., Personal Control over Decisions to Participate in Research by Persons with Histories of Both Substance Use Disorders and Criminal Justice Supervision, 13 Journal of Empirical Research on Human Research Ethics 160–172 (2018).