Religious Perspectives on Precision Medicine in Singapore

Hui Jin Toh,Tamra Lysaght,Hung Yong Tay,Raza Zaidi,Sarabjeet Singh,You Guang Shi,Serene Ai Kiang Ong,Chitra Sankaran,Malminderjit Singh,Roland Chia,Angela Ballantyne,Zhixia Tan,Swami Samachittananda

doi:10.1007/s41649-021-00180-4

Hui Jin Toh, Tamra Lysaght + Show 11 more

Open Access

https://doi.org/10.1007/s41649-021-00180-4

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Abstract

Precision medicine (PM) aims to revolutionise healthcare, but little is known about the role religion and spirituality might play in the ethical discourse about PM. This Perspective reports the outcomes of a knowledge exchange fora with religious authorities in Singapore about data sharing for PM. While the exchange did not identify any foundational religious objections to PM, ethical concerns were raised about the possibility for private industry to profiteer from social resources and the potential for genetic discrimination by private health insurers. According to religious authorities in Singapore, sharing PM data with private industry will require a clear public benefit and robust data governance that incorporates principles of transparency, accountability and oversight.

Highlights

Governments around the world are investing in large scale national programmes for precision medicine (PM) and Singapore has recently launched the National Precision Medicine (NPM) strategy (PRECISE n.d.)
Longitudinal large-scale data collection and sharing across the public and private sector raise several challenges including data security, privacy, public trust, as well as the scope of data-subjects’ consent and social licence for data sharing (Chataway et al 2012). This Perspective summarises the outcomes of knowledge exchange in a facilitated workshop with religious authorities in Singapore to share their perspectives on PM, and data sharing with the organizations in the public and private sectors
The general consensus at the workshop was that a commitment to public benefit, transparency, accountability and robust governance models will be necessary to engender the support of religious authorities for the sharing of PM data from Singapore with commercial companies, especially in the absence of specific consent for such sharing

Summary

Background

Governments around the world are investing in large scale national programmes for precision medicine (PM) and Singapore has recently launched the National Precision Medicine (NPM) strategy (PRECISE n.d.). Longitudinal large-scale data collection and sharing across the public and private sector raise several challenges including data security, privacy, public trust, as well as the scope of data-subjects’ consent and social licence for data sharing (Chataway et al 2012) This Perspective summarises the outcomes of knowledge exchange in a facilitated workshop with religious authorities in Singapore (see Annex A in the Supplementary Material) to share their perspectives on PM, and data sharing with the organizations in the public and private sectors. A study in Jordan found that religious permission for biobanking was one of the two most influential factors for prompting public participation in biobanking (Ahram et al 2014) For these reasons, we invited religious authorities from across Singapore to share knowledge in a workshop on ethical issues raised by PM.

A Workshop with Religious Authorities in Singapore

Conclusions