Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.

ABSTRACT:

Background

Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this.

Methods

We analyse the 'Your DNA, Your Say' online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle- and high-income countries, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures.

Results

SUBMITTER: Milne R 

PROVIDER: S-EPMC8147072 | biostudies-literature | 2021 May

REPOSITORIES: biostudies-literature