Trustworthy Governance of Genomic and Health-Related Data: Lessons from Singapore

Aitken, M., S. Cunningham-Burley, and C. Pagliari. 2016a. Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme. Science and Public Policy 43: 713–723. https://doi.org/10.1093/scipol/scv075.

Article  Google Scholar 

Aitken, M., J. de St Jorre, C. Pagliari, R. Jepson, and S. Cunningham-Burley. 2016b. Public responses to the sharing and linkage of health data for research purposes: A systematic review and thematic synthesis of qualitative studies. BMC Medical Ethics 17: 73. https://doi.org/10.1186/s12910-016-0153-x.

Article  Google Scholar 

Ballantyne, A. 2018. Where is the human in the data? A Guide to Ethical Data Use. GigaScience 7 (7): giy076. https://doi.org/10.1093/gigascience/giy076.

Article  Google Scholar 

Ballantyne, A. 2020. How should we think about clinical data ownership? Journal of Medical Ethics 46: 289–294. https://doi.org/10.1136/medethics-2018-105340.

Article  Google Scholar 

Ballantyne, A., and G. O. Schaefer. 2020. Public interest in health data research: Laying out the conceptual groundwork. Journal of Medical Ethics 46: 610–616. https://doi.org/10.1136/medethics-2020-106152.

Article  Google Scholar 

Ballantyne, A., T. Lysaght, H. J. Toh, et al. 2022. Sharing precision medicine data with private industry: Outcomes of a citizens’ jury in Singapore. Big Data & Society 9 (1): 20539517221108988. https://doi.org/10.1177/20539517221108988.

Article  Google Scholar 

Braun, Matthias, and Patrik Hummel. 2022. Data justice and data solidarity. Patterns 3 (3): 100427. https://doi.org/10.1016/j.patter.2021.100427.

Article  Google Scholar 

Carter, P., G. T. Laurie, and M. Dixon-Woods. 2015. The social license for research: Why care.data ran into trouble. Journal of Medical Ethics 5: 404–409. https://doi.org/10.1136/medethics-2014-102374.

Article  Google Scholar 

Chataway, J., C. Fry, S. Marjanovic, and O. Yaqub. 2012. Public-private collaborations and partnerships in stratified medicine: Making sense of new interactions. New Biotechnology 29 (6): 732–740. https://doi.org/10.1016/j.nbt.2012.03.006.

Article  Google Scholar 

CIOMS. 2016. International ethical guidelines for health-related research involving humans. 4th ed. Geneva: Council for International Organizations of Medical Sciences (CIOMS).

Google Scholar 

Dang, J. H. T., E. M. Rodriguez, J. S. Luque, D. O. Erwin, C. D. Meade, and M. S. Chen. 2014. Engaging diverse populations about bio specimen donation for cancer research. Journal of Community Genetics 5: 313–327. https://doi.org/10.1007/s12687-014-0186-0.

Article  Google Scholar 

Data Futures Partnership. 2017. A path to social license: Guidelines for trusted data use. https://aisp.upenn.edu/resource-article/a-path-to-social-license-guidelines-for-trusted-data-use/. Accessed 23 Feb 2026.

Davies, R., J. Ives, and M. Dunn. 2015. A systematic review of empirical bioethics methodologies. BMC Medical Ethics 16: 15. https://doi.org/10.1186/s12910-015-0010-3.

Article  Google Scholar 

Department of Health and Social Care. 2018. The future of healthcare: our vision for digital, data and technology in health and care. https://www.gov.uk/government/publications/the-future-of-healthcare-our-vision-for-digital-data-and-technology-in-health-and-care/the-future-of-healthcare-our-vision-for-digital-data-and-technology-in-health-and-care. Accessed 23 Feb 2026.

Doble, B. 2016. Budget impact and cost-effectiveness: Can we afford precision medicine in oncology? Scandinavian Journal of Clinical and Laboratory Investigation. 245: S6–S11. https://doi.org/10.1080/00365513.2016.1206437.

Article  Google Scholar 

Dunn, M., M. Sheehan, T. Hope, and M. Parker. 2012. Toward methodological innovation in empirical ethics research. Cambridge Quarterly of Healthcare Ethics 21 (4): 466–480. https://doi.org/10.1017/s0963180112000242.

Article  Google Scholar 

Fisher, E. R., R. Pratt, R. Esch, et al. 2019. The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies. Molecular Genetics & Genomic Medicine 8 (2): e1099.

Article  Google Scholar 

GA4GH. 2019. Framework for responsible sharing of genomic and health-related data. Global Alliance for Genomica & Health. https://www.ga4gh.org/document/framework-for-responsible-sharing-of-genomic-and-health-related-data-sharing-v1/. Accessed 23 Feb 2026.

GDPR. 2018. General Data Protection Regulation. https://gdpr-info.eu/. Accessed 13 Mar 2026.

Geneviève, Lester Darryl, Andrea Martani, David Shaw, Bernice Simone Elger, and Tenzin Wangmo. 2020. Structural racism in precision medicine: leaving no one behind. BMC Medical Ethics 2020 (21): 17. https://doi.org/10.1186/s12910-020-0457-8.

Article  Google Scholar 

Goodin, R. E., and J. S. Dryzek. 2006. Deliberative impacts: The macro-political uptake of mini-publics. Politics & Society 34 (2): 219–244. https://doi.org/10.1177/0032329206288152.

Article  Google Scholar 

Harvey, K., and G. Laurie. 2024. Proxies of trustworthiness: A novel framework to support theperformance of trust in human health research. Bioethical Inquiry 21 (4): 625–645. https://doi.org/10.1007/s11673-024-10335-1.

Article  Google Scholar 

Hill, E. M., E. L. Turner, R. M. Martin, and J. L. Donovan. 2013. “Let’s get the best quality research we can”: public awareness and acceptance of consent to use existing data in health research: a systematic and qualitative study. BMC Medical Research Methodology 13: 72. https://doi.org/10.1186/1471-2288-13-72.

Article  Google Scholar 

Hummel, P., M. Braun, and P. Dabrock. 2021. Own data? Ethical reflections on data ownership. Philosophy& Technology 34 (1): 545–572. https://doi.org/10.1007/s13347-020-00404-9.

Article  Google Scholar 

Interlandi, J. 2016. The paradox of precision medicine. Scientific American 314 (4): 24–25. https://doi.org/10.1038/scientificamerican0416-24.

Article  Google Scholar 

Ipsos MORI. 2016. The one-way mirror: public attitudes to commercial access to health data. Wellcome Trust. https://cms.wellcome.org/sites/default/files/public-attitudes-to-commercial-access-to-health-data-wellcome-mar16.pdf. Accessed 12 Mar 2026.

Ives, J., M. Dunn, and A. Cribb. 2016. Empirical bioethics: theoretical and practical perspectives. In CambridgeBioethics and Law. Cambridge: Cambridge University Press.

Google Scholar 

Jia, Shuqin, Lianhai Zhang, Jianmin Wu, Yang Shao, Fangping Zhao, Qijing Li, Hai Yan, Liang Zong, and JiafuJi. 2016. Urgent need for implementation of precision medicine in gastric cancer in China. In Precision Medicine in China, edited by Sean Sanders, and Jackie Oberst. Washington, DC: American Association for the Advancement of Science. https://www.science.org/cms/asset/dfa11933-4d20-4354-9fcf-e38bd91f6b55/bioyong_booklet_2016_12_23.pdf. Accessed 13 Mar 2026.

Jijelava, D., and F. Vanclay. 2017. Legitimacy, credibility and trust as the key components of a social license to operate: An analysis of BP’s projects in Georgia. Journal of Cleaner Production 140 (3): 1077–1086. https://doi.org/10.1016/j.jclepro.2016.10.070.

Article  Google Scholar 

Kalkman, Shona, J. J. M. van Delden, A. Banerjee, B. Tyl, M. Mostert, and G. van Thiel. 2019a. Patients’ and public views and attitudes towards the sharing of health data for research: A narrative review of the empirical evidence. Journal of Medical Ethics 48 (1): 3–13. https://doi.org/10.1136/medethics-2019-105651.

Article  Google Scholar 

Kalkman, Shona, Menno Mostert, Christopher Gerlinger, Johannes J. M. van Delden, and G. J. M. W. van Thiel. 2019b. Responsible data sharing in international health research: a systematic review of principles and norms. BMC Medical Ethics 20 (1): 21. https://doi.org/10.1186/s12910-019-0359-9.

Article  Google Scholar 

Kickbusch, I., D. Piselli, A. Agrawal, et al. 2011. The lancet and financial times commission on governing health futures 2030: Growing up in a digital world. Lancet 398 (10206): 1727–1776. https://doi.org/10.1016/s0140-6736(19)32181-6.

Article  Google Scholar 

Kim, H., H. R. Kim, S. Kim, E. Kim, S. Y. Kim, and H.-Y. Park. 2020. Public attitudes toward precision medicine: A nationwide survey on developing a national cohort program for citizen participation in the Republic of Korea. Frontiers in Genetics 11: 283. https://doi.org/10.3389/fgene.2020.00283.

Article  Google Scholar 

Kuehlmeyer, K., B. Jansky, M. Mertz, and G. Marckmann. 2023. Transformative medical ethics: A framework for changing practice according to normative-ethical requirements. Bioethics 38 (3): 241–251 https://doi.org/10.1111/bioe.13185.

Article  Google Scholar 

Lancet. 2018. Personalised medicine in the UK. Lancet 391 (10115): e1. https://doi.org/10.1016/s0140-6736(17)33261-0

Laurie, G., and L. Stevens. 2016. Developing a public interest mandate for the governance and use of administrative data in the United Kingdom. Journal of Law and Society 43 (3): 360–392. https://doi.org/10.1111/j.1467-6478.2016.00759.x.

Article  Google Scholar 

Lysaght, T., A. Ballantyne, V. Xafis, et al. 2020. “Who is watching the watchdog?”: Ethical perspectives ofsharing health-related data for precision medicine in Singapore. BMC Medical Ethics 21: 118. https://doi.org/10.1186/s12910-020-00561-8.

Lysaght, T., A. Ballantyne, T. H. Jin, et al. 2021. Trust and trade-offs in sharing data for precision medicine: a national survey of Singapore. Journal of Personalized Medicine. 11 (9): 921. https://doi.org/10.3390/jpm11090921.

Article  Google Scholar 

Lysaght, Tamra, Hui Yun Chan, James Scheibner, Hui Jin Toh, and Bernadette Richards. 2023. An ethical code for collecting, using and transferring sensitive health data: outcomes of a modified Policy Delphi process in Singapore. BMC Medical Ethics 24 (1): 78. https://doi.org/10.1186/s12910-023-00952-7.

Article  Google Scholar 

MacEachern, S. J., and N. D. Forkert. 2020. Machine learning for precision medicine. Genome 64 (4): 416–425. https://doi.org/10.1139/gen-2020-0131.

Article  Google Scholar 

Middleton, A., R. Milne, M. A. Almarri, et al. 2020. Global public perceptions of genomic data sharing: What shapes the willingness to donate DNA and health data? American Journal of Human Genetics 107 (4): 743–752. https://doi.org/10.1016/j.ajhg.2020.08.023.

Article  Google Scholar 

Milne, R., K. I. Morley, H. Howard, et al. 2019. Trust in genomic data sharing among members of the general public in the UK, USA. Canada and Australia. Human Genetics 138 (11–12): 1237–1246. https://doi.org/10.1007/s00439-019-02062-0.

Article  Google Scholar 

Ministry for Culture, Community and Youth. 2021. Tackling racism and racial discrimination. https://www.mccy.gov.sg/about-us/news-and-resources/parliamentary-matters/2021/jul/tackling-racism-racial-discrimination. Accessed 13 Mar 2026.

Ministry of Health. 2021. Moratorium on genetic testing and insurance. Use of genetic test results in insurance underwriting. Singapore: Ministry of Health.

Google Scholar 

Moffat, K., J. Lacey, A. Zhang, and S. Leipold. 2016. The social license to operate: A critical review. Forestry 89 (5): 477–488. https://doi.org/10.1093/forestry/cpv044.

Article 

Comments (0)

No login
gif