Reporting of secondary findings in genomic research: Stakeholders’ attitudes and preferences

Richter, Gesine; Clercq, Eva De; Mertz, Marcel; Buyx, Alena

doi:10.1016/b978-0-12-816549-2.00006-0

Cited by 1 publication

(2 citation statements)

References 109 publications

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“…The majority of researchers in this cohort expressed positive attitudes regarding the return of multi-omics results, particularly if they were considered actionable. This finding is in keeping with researchers’ positive attitudes towards genomics return of results reported previously (23,25,34). Respect for participant autonomy, perception of minimal harms and future value of multi-omics information were brought up as justification for returning multi-omics results, and closely align with the ethical principles outlined by various expert working groups (2,5,35).…”

Section: Discussionsupporting

confidence: 92%

“…Researchers are a particularly critical voice as they are responsible for decisions to return results, protocol development, and implementation (22). To minimize potential burdens of that responsibility and any potential moral distress, their views should be taken into account when developing policy (23). Multiple studies have surveyed researcher views, attitudes, or perspectives about return of results for genomics (eg (24)(25)(26)(27)(28)(29)(30).…”

Section: Introductionmentioning

confidence: 99%

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Researcher Views on Multi-omics Return of Results to Research Participants: Insights from the Molecular Transducers of Physical Activity Consortium (MoTrPAC) Study

Ormond,

Stanclift,

Reuter

et al. 2024

Preprint

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Background: There is growing consensus in favor of returning individual specific research results that are clinically actionable, valid, and reliable. However, deciding what and how research results should be returned remains a considerable challenge. Researchers are key stakeholders in return of results decision-making and implementation. Multi-omics data contains medically relevant findings that could be considered for return. We sought to understand researchers' views regarding the potential for multi-omics data derived return of results from a large, national consortium generating multi-omics data. Methods: Researchers from the Molecular Transducers of Physical Activity Consortium (MoTrPAC) were recruited for in-depth semi-structured interviews. To assess understanding of potential clinical utility for types of data collected and attitudes towards return of results in multi-omic clinical studies, we devised an interview guide focusing on types of results generated in the study which could hypothetically be returned based on review of the literature and professional expertise of team members. The semi-structured interviews were recorded, transcribed verbatim and co-coded. Thematic trends were identified for reporting. Results: We interviewed a total of 16 individuals representative of 11 sites and 6 research roles across MoTrPAC. Many respondents expressed positive attitudes regarding hypothetical multi-omics results return, citing participant rights to their data and perception of minimal harm. Ethical and logistical concerns around the return of multi-omics results were raised, including: uncertain clinical validity, a lack of expertise to communicate results, and an unclear obligation regarding whether to return multi-omics results. Further, researchers called for more guidance from funding agencies and increased researcher education regarding return of results. Conclusion: Overall, researchers expressed positive attitudes toward multi-omic return of results in principle, particularly if medically actionable. However, competing ethical considerations, logistical constraints, and need for more external guidance were raised as key implementation concerns. Future studies should consider views and experiences of other relevant stakeholders, specifically clinical genomics professionals and study participants, regarding the clinical utility of multi-omics information and multi-omics results return.

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