Four student theses were completed. Two are described below. All studies will all be presented at the The National Society of Genetic Counselors' conference in Pittsburg, October 2015 and will soon be submitted for publication. Marci Barr: Testing for Hereditary Cancer Predisposition The purpose of this study was to examine how the presentation of a decision can influence choices about genetic testing for inherited cancer predispositions. Specifically, how the number of options and the addition of a personalized recommendation might influence outcomes such as the likelihood of undergoing genetic testing, the genetic test chosen, and whether a persons test choice matches their personal preferences. An online hypothetical vignette study was completed by 454 healthy volunteers. Each participant was randomized to receive one of two survey versions which differed in the manner of presenting testing options and how these options were integrated with a provider recommendation. Regression analyses were performed to determine the relationships between the presentation of choice and participant decisions. Wilcoxon rank-sign tests were used to determine the impact of a provider recommendation on final genetic testing choices. Participants were more likely to choose to undergo genetic testing when presented with three options instead of two (OR: 2.00 p=0.014). This effect was no longer observed when individuals who had decided not to undergo testing were presented with a third option (OR: 0.90 p=0.775). The addition of a provider recommendation did not significantly change the overall distribution of options chosen (p=0.746). However, after a recommendation, participants were more likely to choose the test that best matched with personal preferences about the type of genetic information desired (p<0.001). Participants are more likely to undergo genetic testing when presented with more options. They are also more likely to select an option in line with personal preference if presented with a recommendation based on this preference. Caroline Young: Genetics researchers' perceived obligations to return incidental findings and individual results to participants Clinical investigators are increasingly facing decisions about returning individual research results (IRRs) and incidental findings (IFs) and 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. Human genetics researchers identified through the American Society of Human Genetics 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.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 too 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 IFs or IRRs 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. These results provide insights into how researchers are thinking about their ethical obligation to their participants, and suggest that the extent of this obligation.
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