Participant preferences for the return of non-genetic research results: An interview study of participants from a rheumatoid arthritis trial

While there is a large focus on return of genetic research results, more information is needed regarding participant preferences for the return of non-genetic research results generated from biospecimens that provide unclear clinical benefit. Participants in the Rheumatoid Arthritis Study of the Myocardium (RHYTHM) trial were interviewed over the phone. Many participants expressed the desire to receive both non-genetic and genetic research results that do not have clear clinical actionability. Factors that would affect a participant’s desire to receive non-genetic research results that do not have clear clinical actionability included clinical care considerations, empowerment, and personal preference. Regarding when to return non-genetic research results, there was variability in participants’ preferences, with many recognizing the complexities of the research process and wanting to give researchers enough time to analyze results meaningfully. Participants emphasized flexibility in how to return non-genetic research results and considered other factors such as security and environmental concerns. To assist with comprehension of non-genetic research results, participants had a variety of preferences for the extent of details that they wanted, including contact information for questions, additional explanations in lay and non-medical terms, and guidance on next steps. Our data show both similar and divergent participant preferences for receiving genetic versus non-genetic research results that do not have clear clinical actionability. The variety of preferences regarding what, when, and how non-genetic research results should be returned underscores the ethical imperative to move beyond clinical utility by integrating participant experiences and preferences into research practices to build trust and engagement in the research process.