Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric...

Area of Science:

• Genomic research
• Biobanking ethics
• Participant engagement

Background:

• The value of returning individual research results (IRRs) to participants in genomic biobank research, based on their preferences, remains uncertain.
• Genomic biobanks collect vast amounts of data, raising ethical considerations regarding data sharing and result disclosure.

Purpose of the Study:

• To assess participant satisfaction with different policies for returning individual research results (IRRs) from genomic biobanks.
• To evaluate the impact of a preference-setting tool on participant experience and perceptions of biobank benefit.

Main Methods:

• Development of an online tool allowing participants to set preferences for receiving IRRs based on condition preventability and severity.
• Randomized hypothetical scenarios assigning parents of pediatric patients to four biobank policies: None, All, Binary (all or none), or Granular (using the preference tool).
• Survey distributed to 11,391 parents, with 2,718 completing the study assessing satisfaction with the biobank and IRRs.

Main Results:

• The 'Granular' group, utilizing the preference-setting tool, reported the highest satisfaction with the process, biobank, and received IRRs.
• The 'None' group exhibited the lowest satisfaction and were least likely to perceive the biobank as beneficial (p < .001).
• No significant difference in perceived harm of the biobank was observed across the groups.

Conclusions:

• Enabling participants to customize their preferences for receiving individual research results enhances satisfaction with genomic biobanks.
• The ability to designate preferences for IRRs may be a key factor in increasing participation and engagement in biobank research.
• Preference-based return of results aligns participant expectations with biobank operations, fostering trust and perceived value.