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Experiences and attitudes of genome investigators regarding return of individual genetic test results.

ABSTRACT: Whether and how to return individual genetic results to study participants is among the most contentious policy issues in contemporary genomic research.We surveyed corresponding authors of genome-wide association studies, identified through the National Human Genome Research Institute's Catalog of Published Genome-Wide Association Studies, to describe the experiences and attitudes of these stakeholders.Of 357 corresponding authors, 200 (56%) responded. One hundred twenty-six (63%) had been responsible for primary data and sample collection, whereas 74 (37%) had performed secondary analyses. Only 7 (4%) had returned individual results within their index genome-wide association studies. Most (69%) believed that return of results to individual participants was warranted under at least some circumstances. Most respondents identified a desire to benefit participants' health (63%) and respect for participants' desire for information (57%) as major motivations for returning results. Most also identified uncertain clinical utility (76%), the possibility that participants will misunderstand results (74%), the potential for emotional harm (61%), the need to ensure access to trained clinicians (59%), and the potential for loss of confidentiality (51%) as major barriers to return of results.Investigators have limited experience returning individual results from genome-scale research, yet most are motivated to do so in at least some circumstances.

SUBMITTER: Ramoni RB

PROVIDER: S-EPMC4143384 | biostudies-literature | 2013 Nov

REPOSITORIES: biostudies-literature

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Experiences and attitudes of genome investigators regarding return of individual genetic test results.

Ramoni Rachel B RB McGuire Amy L AL Robinson Jill Oliver JO Morley Debra S DS Plon Sharon E SE Joffe Steven S

Genetics in medicine : official journal of the American College of Medical Genetics 20130502 11

<h4>Purpose</h4>Whether and how to return individual genetic results to study participants is among the most contentious policy issues in contemporary genomic research.<h4>Methods</h4>We surveyed corresponding authors of genome-wide association studies, identified through the National Human Genome Research Institute's Catalog of Published Genome-Wide Association Studies, to describe the experiences and attitudes of these stakeholders.<h4>Results</h4>Of 357 corresponding authors, 200 (56%) respon ...[more]

PMID: 23639901

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Project description:BackgroundPreregistration, the open science practice of specifying and registering details of a planned study prior to knowing the data, increases the transparency and reproducibility of research. Large-scale replication attempts for psychological results yielded shockingly low success rates and contributed to an increasing demand for open science practices among psychologists. However, preregistering one's studies is still not the norm in the field. Here, we conducted a study to explore possible reasons for this discrepancy.MethodsIn a mixed-methods approach, we conducted an online survey assessing attitudes, motivations, and perceived obstacles with respect to preregistration. Respondents (N = 289) were psychological researchers that were recruited through their publications on Web of Science, PubMed, PSYNDEX, and PsycInfo, and preregistrations on OSF Registries. Based on the theory of planned behavior, we predicted that positive attitudes (moderated by the perceived importance of preregistration) as well as a favorable subjective norm and higher perceived behavioral control positively influence researchers' intention to preregister (directional hypothesis 1). Furthermore, we expected an influence of research experience on attitudes and perceived motivations and obstacles regarding preregistration (non-directional hypothesis 2). We analyzed these hypotheses with multiple regression models and included preregistration experience as a control variable.ResultsResearchers' attitudes, subjective norms, perceived behavioral control, and the perceived importance of preregistration significantly predicted researchers' intention to use preregistration in the future (see hypothesis 1). Research experience influenced both researchers' attitudes and their perception of motivations to preregister, but not the perception of obstacles (see hypothesis 2). Descriptive reports on researchers' attitudes, motivations and obstacles regarding preregistration are provided.DiscussionMany researchers had already preregistered and had a rather positive attitude toward preregistration. Nevertheless, several obstacles were identified that may be addressed to improve and foster preregistration.

Project description:Newer data platforms offer increased opportunity to share multidimensional health data with research participants, but the preferences of participants for which data to receive and how is evolving. Our objective is to describe the preferences and expectations of participants for the return of individual research results within Project Baseline Health Study (PBHS). The PBHS is an ongoing, multicenter, longitudinal cohort study with data from four initial enrollment sites. PBHS participants are recruited from the general population along with groups enriched for heart disease and cancer disease risk. Cross-sectional data on return of results were collected in 2017-2018 from an (1) in-person enrollment survey (n = 1,890), (2) benchmark online survey (n = 1,059), and (3) participant interviews (n = 21). The main outcomes included (1) preferences for type of information to be added next to returned results, (2) participant plans for sharing returned results with a non-study clinician, and (3) choice to opt-out of receiving genetic results. Results were compared by sociodemographic characteristics. Enrollment and benchmark survey respondents were 57.1% and 53.5% female, and 60.0% and 66.2% white, respectively. Participants preferred the following data types be added to returned results in the future: genetics (29.9%), heart imaging, (16.4%), study watch (15.8%), and microbiome (13.3%). Older adults (OR 0.60, 95% CI: 0.41-0.87) were less likely to want their genetic results returned next. Forty percent of participants reported that they would not share all returned results with their non-study clinicians. Black (OR 0.64, 95% CI 0.43-0.95) and Asian (OR 0.47, 95% CI 0.30-0.73) participants were less likely, and older participants more likely (OR 1.45-1.61), to plan to share all results with their clinician than their counterparts. At enrollment, 5.8% of participants opted out of receiving their genetics results. The study showed that substantial heterogeneity existed in participant's preferences and expectations for return of results, and variations were related to sociodemographic characteristics.

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Experiences and attitudes of genome investigators regarding return of individual genetic test results.

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Experiences and attitudes of genome investigators regarding return of individual genetic test results.

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