Simpson Paul Leslie, Guthrie Jill, Jones Jocelyn, Haire Bridget, Butler Tony
School of Population Health, University of New South Wales, Sydney, New South Wales, Australia.
National Centre for Epidemiology and Population Health, The Australian National University, Canberra, Australian Capital Territory, Australia.
Soc Sci Med. 2025 Feb;367:117751. doi: 10.1016/j.socscimed.2025.117751. Epub 2025 Jan 23.
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.
鉴于过去对被监禁者的虐待等因素，涉及监狱中人员的研究规划引发了诸多担忧。尽管已经制定了监狱研究伦理行为的指导方针，但研究人员和倡导者质疑，当前旨在保护被监禁者免受不道德研究影响的方法是否不公平地将这一群体排除在参与研究并从中受益之外。关于这些问题的讨论大多来自专家意见。而被监禁者自己的声音却缺失了。本研究根据监狱中的人员确定了涉及监狱中人员的健康研究的关键伦理问题。采用协商方法，于2019年1月至5月在澳大利亚的六所监狱（三所男子监狱和三所女子监狱）进行了公民陪审团调查。在表达兴趣过程之后，共挑选了50名参与者。向参与者展示了专家预先录制的信息，随后他们进行了近4小时的审议，然后就关键伦理问题达成集体共识。选出的反复出现的问题有：1. 参与者应收到研究结果；2. 让有实际经验的个人参与评估监狱中应该开展哪些研究；3. 确保获得研究机会与社区中的人平等；4. 通过防止狱警挑选参与者来解决招募偏差问题；5. 保护参与者回答的保密性；6. 认可监狱中的人员有能力给出知情同意；7. 防止可能导致监狱当局审查研究结果的利益冲突。文中描述了已确定问题中的重点，并表明如果我们要真正考虑监狱中人员的声音，那么或许是时候采用一些方法，让被监禁公民更易于参与研究了。
