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It is becoming increasingly common to return individual-level research results to participants, especially in genetic studies (1). Yet, when the study ends, it is rare for participants to learn the… Click to show full abstract
It is becoming increasingly common to return individual-level research results to participants, especially in genetic studies (1). Yet, when the study ends, it is rare for participants to learn the study’s aggregate results (2). The contributors to this include limited time and funding, limited expertise in effective communication with non-medical audiences, and journal embargo policies. The ethical reasons for returning aggregate trial results include respect for participants’ time, promoting trust, and sharing information with those who made the results possible. However, there is a paucity of evidence to inform effective approaches to provide aggregate study results to participants (3–5).
Journal Title: Pediatric research
Year Published: 2020
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