"Who is watching the watchdog?": ethical perspectives of sharing health-related data for precision medicine in Singapore.

ABSTRACT:

Background

We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine (PM) and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research.

Methods

We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages (English, Mandarin and Malay) and analysed with qualitative content and thematic analysis.

Results

Four key themes emerged: nuanced understandings of data security and data sensitivity; trade-offs between data protection and research benefits; trust (and distrust) in the public and pri

SUBMITTER: Lysaght T 

PROVIDER: S-EPMC7678103 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature