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Return of individual research results: What do participants prefer and expect?
- Source :
- PLoS ONE, PLoS ONE, Vol 16, Iss 7, p e0254153 (2021)
- Publication Year :
- 2021
- Publisher :
- Public Library of Science, 2021.
-
Abstract
- 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.
- Subjects :
- 0301 basic medicine
Male
Epidemiology
030105 genetics & heredity
Surveys
Cardiovascular Medicine
Lung and Intrathoracic Tumors
Health data
Medical Conditions
Medicine and Health Sciences
Medicine
Longitudinal Studies
Longitudinal cohort
education.field_of_study
Multidisciplinary
Cancer Risk Factors
Microbial Genetics
Patient Preference
Genomics
Middle Aged
Oncology
Research Design
Cardiovascular Diseases
Medical Microbiology
Female
Return of results
Research Article
Science
Population
MEDLINE
Cardiology
Microbial Genomics
Research and Analysis Methods
Microbiology
03 medical and health sciences
Genetics
Humans
education
Aged
Survey Research
business.industry
Information Dissemination
Biology and Life Sciences
Cancers and Neoplasms
Cardiovascular Disease Risk
030104 developmental biology
Cross-Sectional Studies
Medical Risk Factors
Disease risk
Microbiome
business
Demography
Subjects
Details
- Language :
- English
- ISSN :
- 19326203
- Volume :
- 16
- Issue :
- 7
- Database :
- OpenAIRE
- Journal :
- PLoS ONE
- Accession number :
- edsair.doi.dedup.....edc89cdf38150f70315b5bd398b81026