Genetics Researchers’ Perceived Obligations to Return Incidental Findings and Individual Research Results to Participants
Young, Caroline Evans
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Background: Clinical investigators are increasingly facing decisions about returning individual research results (IRRs) and incidental findings (IFs) from genome sequencing to research participants. Studies have shown that participants are interested in receiving results. Yet there has been debate in the bioethics community about the extent of researcher obligation to return both IRRs and IFs. Little research has focused on whether researchers perceive that they have an ethical obligation to return results, and whether such perceptions predict the return of results. Objective: This study examines researchers’ perceptions about and predictors of their obligation to return results to participants. Further, we report on whether perceptions of obligations are concordant with reported practice. Methods: Human genetics researchers identified through the American Society of Human Genetics (ASHG) and the National Institutes of Health database of genotypes and phenotypes (dbGaP) were invited to complete an online survey conducted by the Genetics and Public Policy Center seeking to describe perspectives about current issues in genetics including consent, privacy protections, data sharing, and the return of individual research results. This study, a secondary data analysis, seeks to describe the extent of researchers’ perceptions of legal and ethical obligation to return results, describe predictors of such attitudes, and describe factors related to the reported return of results to participants. Results: Genetics researchers varied in the extent of their perceived obligation to return IRRs and IFs to their participants. While the majority of researchers (68%, n=242) support returning IRRs or IFs to participants, less than half reported feeling an obligation to return results (IRRs: 44%, n=158; IFs: 44%, n=157). Multiple linear regression showed that the use of clinical samples was predictive of higher perceived obligation to return results (p<0.01), while work setting was also predictive of feelings of obligation (p<0.05). The majority of genetics researchers (60%) do not return any IRRs or IFs to their participants. Further multivariate analysis revealed that those with higher perceived obligation and those with more interaction with participants were more likely to return results (p<0.01). Among those who do not return results, there were many influences on their decisions including lack of useful results generated as well as barriers associated with IRBs, consent constraints, and level of contact with participants. Conclusions: These results provide insights into how researchers are thinking about their ethical obligation to their participants, and suggest that the extent of this obligation and the level of interaction with participants are associated with the return of IRRs and IFs. In the current research climate with a paucity of overarching guidelines on the topic, research teams often determine actual practice. This research suggests that these decisions are informed in part by the amount of interaction researchers have with their participants and the amount of perceived obligation felt by researchers, which provides assistance in thinking about how future guidelines may be conceptualized.
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