IRB: Ethics & Human Research

Moving from the “Why” to the “How”: Two Approaches to Including Research Participants’ Voices

While Rebecca Dresser, in this issue, provides a strong argument for the inclusion of experienced research participant voices in research ethics discussions, a major challenge to her argument lies in the practical barriers to actually including them. I suggest two major practical approaches to involving experienced research participants in these venues: the direct approach and the indirect approach. The direct approach brings experienced research participants to the table to engage face-to-face, while the indirect approach brings data about the experiences of research participants to the conversation via published empirical work. I explore the advantages and disadvantages of each approach and suggest how to combine the two to best leverage the strengths and weaknesses of each.

Key words: clinical trials, human research subjects, patient-centered research, engaging research participants, research participants as partners

The Hastings Center has never shied away from the toughest ethical challenges faced by society.



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