Public attitudes for genomic policy brief: genomic data sharing in Singapore

2 Jul 2024

The National Precision Medicine Program in Singapore is conducting ongoing consultation of Singaporeans to gather insights on the public’s opinions about genomic data sharing to inform related data governance policies.

Birds eye view of people walking on a street, connected by a network.

By Marthe Smedinga, Research Fellow at the National University of Singapore

The National Precision Medicine Program in Singapore generates and integrates genomic, health, and environmental data of up to one million individuals to support research in healthcare innovation. This blog describes ongoing consultation of Singaporeans to gather input on with whom genomic data should be shared, under what conditions, and for what purpose. 

The Precision Medicine Program in Singapore

The National Precision Medicine Program has already collected more than 10,000 genomes and is currently moving towards collecting the 100,000th genome. This genome data is integrated with other health data, such as lifestyle data, to optimise the data’s research potential. 

Whereas other government-funded national precision medicine programmes have primarily focused on Western populations (e.g. in Europe, the US, and Australia), the programme in Singapore is aimed at recruiting its unique multi-ethnic population that captures the genomic diversity in Asia.  

Promoting research and protecting data via a national data sharing platform

Researchers can make use of the rich dataset via a national data sharing platform after approval is obtained from a local ethics review committee and the platform’s Data Access Committee. 

The platform also allows for linking research and government administrative data, such as hospital administrative data, if necessary for research purposes. 

All the information that can link the data to individuals, such as a name or date of birth, is removed from the platform to protect data privacy. Researchers also cannot download the data. 

What do Singaporeans think about sharing health data for research?

Ongoing consultations with the general public are part of the programme to ensure that its data sharing policies are aligned with norms and expectations in Singapore. Views of the public on data sharing are gathered via national surveys, focus groups, and a citizen jury [1]. 

Overall, the public responses to the programme are positive because of trust in the government’s ability to manage the data and expectations about how results might support data-driven healthcare innovation. There is conditional support for sharing health-related, including genomic, data for precision medicine depending on a few conditions, such as an opt-in regiment with options to withdraw at any time, optimised data protection, independent oversight, and accountability for data users [2].

A national survey showed that Singaporeans’ willingness to share data is more dependent on knowing who is using the data, rather than the purpose of data use, data sensitivity, or whether consent for data use is provided [3]. Figure 1 below illustrates how Singaporeans rate their level of trust in different institutions using deidentified health data for research. Respondents between 21 and 39 years of age were more likely to share data with universities, pharmaceutical and biotechnology companies, and private insurers compared to those 60 years old and above. There were no differences found between religious groups, ethnicity, or gender.

Graph depicting survey results showing level of trust for institutions in Singapore.
Figure 1. National survey results showing mean trust scores for institutions using deidentified health data for research. A score of 6 represents “trust totally” and 1 represents “distrust totally”. The whiskers indicate 95% confidence intervals. Published in [3].

Preliminary survey and focus group results show the Singapore government is most trusted with analysing the data. Sharing data with private insurers, on the other hand, is considered more problematic because of concerns about potential rises in insurance premiums. Support for sharing deidentified data with overseas organisations, including universities, depends on the country of the organisation, its reputation, and whether people or the organisation involved can be held accountable in case of data misuse. As long as the data would be well protected with state-of-the-art techniques, and the research would provide valuable insights, there were not many concerns about sharing sensitive research data. Transparency about who is analysing data and why is appreciated, including when it is the Singaporean government itself that is using the data.

Lessons learned for policy making

Findings of the public consultation on data sharing have been integrated in the programme’s data sharing policy in several ways. For example, an independent oversight body that is led by the Ministry of Health in Singapore has been established to review requests to access data via the data sharing platform. Also, the research projects that have made use of the data platform are described on the platform’s publicly available website.

Conclusion

The National Precision Medicine Program in Singapore generates and integrates genomic, health, and environmental data to support research. Researchers can make use of the gathered data via a national data sharing platform that ensures data protection. Data governance policies have integrated findings from public consultations, such as establishing independent oversight and protecting data with state-of-the-art techniques. There is support for data sharing for research in Singapore, assuming certain conditions are met including independent oversight and accountability for data users.

 

[1] Ballantyne, A., Lysaght, T., Toh, H. J., Ong, S., Lau, A., Owen Schaefer, G., … & Braunack-Mayer, A. (2022). Sharing precision medicine data with private industry: Outcomes of a citizens’ jury in Singapore. Big Data & Society, 9(1), 20539517221108988.

[2] Lysaght, T., Ballantyne, A., Xafis, V., Ong, S., Schaefer, G. O., Ling, J. M. T., … & Tai, E. S. (2020). “Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore. BMC Medical Ethics, 21(1), 1-11.

[3] Lysaght, T., Ballantyne, A., Toh, H. J., Lau, A., Ong, S., Schaefer, O., … & Tai, E. S. (2021). Trust and trade-offs in sharing data for precision medicine: a national survey of Singapore. Journal of Personalized Medicine, 11(9), 921.

 

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