| Title |
Preferences for Return of Genetic Results Among Participants in the Jackson Heart Study and Framingham Heart Study
|
|---|---|
| Published in |
Circulation: Genomic and Precision Medicine, November 2019
|
| DOI | 10.1161/circgen.119.002632 |
| Pubmed ID | |
| Authors |
Steven Joffe, Deborah E Sellers, Lynette Ekunwe, Donna Antoine-Lavigne, Sarah McGraw, Daniel Levy, Greta Lee Splansky |
| Abstract |
Background - Surveys suggest that most research participants desire access to secondary (incidental) genomic findings. However, few studies clarify whether preferences vary by the nature of the finding. Methods - We surveyed members of the Jackson Heart Study (JHS, n=960), the Framingham Heart Study (FHS, n=955), and African-American members of the FHS Omni cohort (n=160) who had consented to genomic studies. Each factorial survey included 3 vignettes, randomly selected from a set of 64, that described a secondary genomic result. Vignettes varied systematically by 5 factors identified by expert panels as salient: phenotype severity, actionability (preventability), reproductive significance, and relative and absolute risk of the phenotype. Respondents indicated whether they would want to receive the result. Data were analyzed separately by cohort using generalized linear mixed models. Results - Response rates ranged from 67-73%. Across vignettes, 88-92% of respondents would definitely or probably want to learn the result. In multivariate analyses among JHS respondents, desire for results was associated with positive attitudes towards genetic testing, lower education, higher subjective numeracy, and younger age, but not with any of the 5 factors. Among FHS respondents, desire for results was associated with higher absolute risk, preventability, reproductive risk, and positive attitudes towards genetic testing. Among FHS Omni respondents, desire for results was associated with positive attitudes towards genetic testing and younger age. Conclusions - Most genetic research participants desire return of secondary genetic results. Several factors identified by expert panels as salient are associated with preferences among FHS, but not JHS or FHS Omni, participants. |
X Demographics
The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 1 | 50% |
| Unknown | 1 | 50% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 1 | 50% |
| Scientists | 1 | 50% |
Mendeley readers
The data shown below were compiled from readership statistics for 25 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 25 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 4 | 16% |
| Researcher | 3 | 12% |
| Student > Bachelor | 2 | 8% |
| Professor | 2 | 8% |
| Student > Ph. D. Student | 1 | 4% |
| Other | 3 | 12% |
| Unknown | 10 | 40% |
| Readers by discipline | Count | As % |
|---|---|---|
| Biochemistry, Genetics and Molecular Biology | 3 | 12% |
| Social Sciences | 3 | 12% |
| Medicine and Dentistry | 3 | 12% |
| Psychology | 1 | 4% |
| Nursing and Health Professions | 1 | 4% |
| Other | 2 | 8% |
| Unknown | 12 | 48% |
Attention Score in Context
This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 27 November 2019.
All research outputs
#17,295,853
of 25,387,668 outputs
Outputs from Circulation: Genomic and Precision Medicine
#819
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Outputs of similar age
#295,815
of 471,660 outputs
Outputs of similar age from Circulation: Genomic and Precision Medicine
#13
of 13 outputs
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