Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey.

ABSTRACT:

Objectives

This article aims to measure the willingness of the Swiss public to participate in personalised health research, and their preferences regarding data management and governance.

Setting

Results are presented from a nationwide survey of members of the Swiss public.

Participants

15 106 randomly selected Swiss residents received the survey in September 2019. The response rate was 34.1% (n=5156). Respondent age ranged from 18 to 79 years, with fairly uniform spread across sex and age categories between 25 and 64 years.

Primary and secondary outcome measures

Willingness to participate in personalised health research and opinions regarding data management and governance.

Results

Most respondents preferred to be contacted and reconsented for each new

SUBMITTER: Brall C 

PROVIDER: S-EPMC9422864 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature