Literature DB >> 31833061

Psychological factors that determine people's willingness-to-share genetic data for research.

Angela Bearth1, Michael Siegrist1.   

Abstract

Of all the information that we share, health and genetic data might be among the most valuable for researchers. As data are handled as particularly sensitive information, a number of pressing issues regarding people's preferences and privacy concerns are raised. The goal of the present study was to contribute to an understanding of people's reported willingness-to-share genetic data for science (WTS). For this, predictive psychological factors (eg, risk and benefit perceptions, trust, knowledge) were investigated in an online survey (N = 416). Overall, participants seemed willing to provide their genetic data for research. Participants who perceived more benefits associated with data sharing were particularly willing to share their data for research (β = .29), while risk perceptions were less influential (β = -.14). As participants with higher knowledge of the potential uses of genetic data for research perceived more benefits (β = .20), WTS can likely be improved by providing people with information regarding the usefulness of genetic data for research. In addition to knowledge and perceptions, trust in data recipients increased people's willingness-to-share directly (β = .24). Especially in the sensitive area of genetic data, future research should strive to understand people's shifting perceptions and preferences.
© 2019 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Entities:  

Keywords:  data sharing; genetic literacy; privacy; risk perception; trust

Mesh:

Year:  2019        PMID: 31833061     DOI: 10.1111/cge.13686

Source DB:  PubMed          Journal:  Clin Genet        ISSN: 0009-9163            Impact factor:   4.438


  2 in total

Review 1.  Developing Data Sharing Models for Health Research with Real-World Data: A Scoping Review of Patient and Public Preferences.

Authors:  Anna Hermansen; Dean A Regier; Samantha Pollard
Journal:  J Med Syst       Date:  2022-10-22       Impact factor: 4.920

2.  Controlling my genome with my smartphone: first clinical experiences of the PROMISE system.

Authors:  Ali Amr; Marc Hinderer; Lena Griebel; Dominic Deuber; Christoph Egger; Farbod Sedaghat-Hamedani; Elham Kayvanpour; Daniel Huhn; Jan Haas; Karen Frese; Marc Schweig; Ninja Marnau; Annika Krämer; Claudia Durand; Florian Battke; Hans-Ulrich Prokosch; Michael Backes; Andreas Keller; Dominique Schröder; Hugo A Katus; Norbert Frey; Benjamin Meder
Journal:  Clin Res Cardiol       Date:  2021-10-25       Impact factor: 6.138

  2 in total

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