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Return of individual research results: What do participants prefer and expect?

Publication ,  Journal Article
Sayeed, S; Califf, R; Green, R; Wong, C; Mahaffey, K; Gambhir, SS; Mega, J; Patrick-Lake, B; Frazier, K; Pignone, M; Hernandez, A; Shah, SH ...
Published in: PLoS One
2021

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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Published In

PLoS One

DOI

EISSN

1932-6203

Publication Date

2021

Volume

16

Issue

7

Start / End Page

e0254153

Location

United States

Related Subject Headings

  • Young Adult
  • Surveys and Questionnaires
  • Patient Preference
  • Middle Aged
  • Male
  • Longitudinal Studies
  • Information Dissemination
  • Humans
  • General Science & Technology
  • Female
 

Citation

APA
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Sayeed, S., Califf, R., Green, R., Wong, C., Mahaffey, K., Gambhir, S. S., … Project Baseline Health Study Research Group. (2021). Return of individual research results: What do participants prefer and expect? PLoS One, 16(7), e0254153. https://doi.org/10.1371/journal.pone.0254153
Sayeed, Sabina, Robert Califf, Robert Green, Celeste Wong, Kenneth Mahaffey, Sanjiv Sam Gambhir, Jessica Mega, et al. “Return of individual research results: What do participants prefer and expect?PLoS One 16, no. 7 (2021): e0254153. https://doi.org/10.1371/journal.pone.0254153.
Sayeed S, Califf R, Green R, Wong C, Mahaffey K, Gambhir SS, et al. Return of individual research results: What do participants prefer and expect? PLoS One. 2021;16(7):e0254153.
Sayeed, Sabina, et al. “Return of individual research results: What do participants prefer and expect?PLoS One, vol. 16, no. 7, 2021, p. e0254153. Pubmed, doi:10.1371/journal.pone.0254153.
Sayeed S, Califf R, Green R, Wong C, Mahaffey K, Gambhir SS, Mega J, Patrick-Lake B, Frazier K, Pignone M, Hernandez A, Shah SH, Fan AC, Krüg S, Shaack T, Shore S, Spielman S, Eckstrand J, Wong CA, Project Baseline Health Study Research Group. Return of individual research results: What do participants prefer and expect? PLoS One. 2021;16(7):e0254153.

Published In

PLoS One

DOI

EISSN

1932-6203

Publication Date

2021

Volume

16

Issue

7

Start / End Page

e0254153

Location

United States

Related Subject Headings

  • Young Adult
  • Surveys and Questionnaires
  • Patient Preference
  • Middle Aged
  • Male
  • Longitudinal Studies
  • Information Dissemination
  • Humans
  • General Science & Technology
  • Female