Elisa A Hurley, PhD, originally discussed this topic in her address at the 2018 Advancing Ethical Research Conference. To read the full article in the Journal of Clinical Research Practices, click here. For more information about the Journal of Clinical Research Practices, click here.

It’s been suggested by some that it is time to jettison the term “research subject” from our research ethics vocabulary—including in the regulations—and  exclusively use the term “research participant” to refer to those who enroll in research. Most recently, the National Academies report, “Returning Individual Research Results to Participants,” included a short but compelling articulation of the argument for moving from “subject” to “participant “across the board—in fact, that is what got me thinking more about this issue.

There are a number of compelling arguments for this wholesale move from “subject” to “participant.” “Participant” is more respectful of people’s autonomy. It signals a welcome move away from outdated notions of paternalism and protectionism—the idea that a research subject is someone who is acted upon and in need of protection from manipulation, rather than someone with the agency to actively choose to participate in research for their own reasons. It also signals how far we’ve moved beyond the troubled history of research at its most exploitative—the Nazi experiments, Tuskegee, Willowbrook, Guatemala—episodes in which vulnerable people were treated as passive subjects, as human guinea pigs, for the sake of science. Finally, using the term “participant” reflects a general shift across the research enterprise toward patient engagement and the principles of transparency and reciprocity, and it may help counteract lingering distrust in the research enterprise and in researchers.

…continue reading ‘Why We Need to Keep the Term “Research Subject” in Our Research Ethics Vocabulary’

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