Improving informed consent in prison research

• In Event: Prison Working Group: Justice, rights, othering and ethics in detention settings

Abstract

Informed consent is an ethical pillar of health-related research involving human subjects, but participants’ understanding of informed consent is often limited. Informed consent is also a critical issue in prison research. First, detained persons are deprived of liberty, a context that may undermine voluntary participation and autonomy. Second, detained persons have disproportionally low levels of education, literacy, and high rates of cognitive or substance- and psychiatric-related impairments. Few studies focused on understanding of informed consent in prison research and tested whether the most effective interventions in the general population are also effective in prison. This talk will present results obtained in a Swiss prison, showing that only 5% of detained persons showed a full understanding of informed consent. We will present the protocol of a randomized controlled trial designed to improve understanding of informed consent in prison research, using a modified “teach-to-goal” vs. standard informed consent process. This study will provide scientific evidence on how to improve informed consent in prison research. Results will be valuable for other vulnerable populations, including people with low levels of education and literacy and high burden of disease.

Author

• Stéphanie Baggio, University of Bern