Justice and Research on Controlled Substances with HIVC Persons

Andreae and colleagues (2016) argue in defense of research involving the use of controlled substances for pain and other symptom control in HIVC patients by raising and defusing selected ethical and legal concerns about this research. While we do not dispute the importance of the research, we are concerned that their discussion construes the research and concomitant issues it raises too narrowly, particularly with respect to data use and confidentiality. In this brief comment, we note and briefly explore five additional issues about data collection and use with HIVC populations that, we believe, are critical to building a case for research with HIVC patients: data availability, data protection, risks of stigmatizing inferences about individuals, potential mismatches between research participants and research beneficiaries, and standards for interventional versus non-interventional research. We begin with two background observations, about the HIVC population and the nature of the research examined by Andreae and colleagues