1. 'Who is watching the watchdog?': ethical perspectives of sharing health-related data for precision medicine in Singapore
- Author
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Serene Ong, Tamra Lysaght, E. Shyong Tai, Gerald Owen Schaefer, Ainsley J Newson, Angela Ballantyne, Ing Wei Khor, Jeffrey Min Than Ling, and Vicki Xafis
- Subjects
Health (social science) ,media_common.quotation_subject ,Data security ,Trust ,0603 philosophy, ethics and religion ,03 medical and health sciences ,Qualitative research ,Public attitudes ,Humans ,Data Protection Act 1998 ,Sociology ,030304 developmental biology ,media_common ,lcsh:R723-726 ,Singapore ,Governance ,0303 health sciences ,Distrust ,Information Dissemination ,business.industry ,Public trust ,Health Policy ,Precision medicine ,06 humanities and the arts ,Bioethics ,Public relations ,Focus group ,Data sharing ,Issues, ethics and legal aspects ,060301 applied ethics ,Thematic analysis ,lcsh:Medical philosophy. Medical ethics ,business ,Research Article - 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 private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore. Conclusion Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective.
- Published
- 2020
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