“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 d...
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| Format: | Article |
| Language: | English |
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BMC
2020-11-01
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| Series: | BMC Medical Ethics |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12910-020-00561-8 |
| _version_ | 1828837506772107264 |
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| author | Tamra Lysaght Angela Ballantyne Vicki Xafis Serene Ong Gerald Owen Schaefer Jeffrey Min Than Ling Ainsley J. Newson Ing Wei Khor E. Shyong Tai |
| author_facet | Tamra Lysaght Angela Ballantyne Vicki Xafis Serene Ong Gerald Owen Schaefer Jeffrey Min Than Ling Ainsley J. Newson Ing Wei Khor E. Shyong Tai |
| author_sort | Tamra Lysaght |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-12T18:43:47Z |
| format | Article |
| id | doaj.art-10cafabedd4f41c5a4a53effee0173d2 |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-12-12T18:43:47Z |
| publishDate | 2020-11-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-10cafabedd4f41c5a4a53effee0173d22022-12-22T00:15:35ZengBMCBMC Medical Ethics1472-69392020-11-0121111110.1186/s12910-020-00561-8“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in SingaporeTamra Lysaght0Angela Ballantyne1Vicki Xafis2Serene Ong3Gerald Owen Schaefer4Jeffrey Min Than Ling5Ainsley J. Newson6Ing Wei Khor7E. Shyong Tai8Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of SingaporeCentre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of SingaporeCentre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of SingaporeCentre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of SingaporeCentre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of SingaporeFaculty of Science, National University of SingaporeSydney Health Ethics, Faculty of Medicine and Health, Sydney School of Public Health, University of SydneyDepartment of Medicine,Yong Loo Lin School of Medicine, National University of SingaporeSaw Swee Hock School of Public Health, National University of SingaporeAbstract 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.http://link.springer.com/article/10.1186/s12910-020-00561-8Data sharingBioethicsGovernancePrecision medicinePublic attitudesPublic trust |
| spellingShingle | Tamra Lysaght Angela Ballantyne Vicki Xafis Serene Ong Gerald Owen Schaefer Jeffrey Min Than Ling Ainsley J. Newson Ing Wei Khor E. Shyong Tai “Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore BMC Medical Ethics Data sharing Bioethics Governance Precision medicine Public attitudes Public trust |
| title | “Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore |
| title_full | “Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore |
| title_fullStr | “Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore |
| title_full_unstemmed | “Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore |
| title_short | “Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore |
| title_sort | who is watching the watchdog ethical perspectives of sharing health related data for precision medicine in singapore |
| topic | Data sharing Bioethics Governance Precision medicine Public attitudes Public trust |
| url | http://link.springer.com/article/10.1186/s12910-020-00561-8 |
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