Ethical issues in conducting health research with people in prison: Results of a deliberative research project conducted with people in Australian prisons

Planning research involving people in prison raises concerns based on past abuses of incarcerated people amongst other factors. Despite the development of guidelines for the ethical conduct of research in prisons, researchers and advocates have questioned whether current approaches aimed at protecting incarcerated persons from unethical research unfairly exclude this group from participating in and benefitting from research. Discussion of these issues comes mostly from expert opinion. An absent voice is that of people in prison. This study identifies the key ethical issues according to people in prison for health research involving people in prison. Using a deliberative approach, citizens' juries were conducted in six Australian prisons (three men's and three women's) between January and May 2019. A total of fifty participants were selected following an expression of interest process. Pre-recorded information by experts was shown to participants who subsequently deliberated for almost 4 h before collectively agreeing on key ethical issues. Reoccurring issues selected were: 1. Participants receive study results; 2. Involve individuals with lived experience in assessing what research should happen in prison; 3. Ensure access to research opportunities is equal to those in the community; 4. Address recruitment bias by preventing custodial staff selection of participants; 5. Protect the confidentiality of participant responses; 6. Recognize the capacity of people in prison to give informed consent; and 7. Prevent conflicts of interest that could result in research findings censorship by prison authorities. Focal points within identified issues are described and suggest that if we are to genuinely consider the voices of people in prison, then it may be time to incorporate ways for research participation to be more accessible to incarcerated citizens.