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Returning research results to individuals who are incarcerated in the USA
1The University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA sahana_raghunathan@med.unc.edu.
Abstract:
The return of research results to populations and individuals is increasingly recognised as both important but ethically complicated. In the USA, there are few studies or detailed evidence-based practices on the return of research results to individuals who are incarcerated. In general, return of research results is not required with some exceptions; however, there are reasons to believe that in many cases returning results is most consistent with the ethical conduct of research. With individuals who are incarcerated, specific considerations for this historically disadvantaged population should be addressed. These are privacy, therapeutic misconception, paternalism, actionability and communication. If research results are returned, the initial consent process should consider thoroughness regarding privacy rights, the researchers' role, clarity around next steps and communication methods. Prison leadership should be key stakeholders in the process to streamline communication. Returning research results can be a method to counter historical and current paternalism in the carceral setting, while shifting the culture on how research is understood and conducted in carceral settings. The decision to return results should balance benefits, risks and research ethics. Further research is needed to identify and implement optimal approaches for returning results in this population.
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