Who is watching the watchdog?
Prof. Tamra Lysaght and Prof. E Shyong Tai examine ethical concerns of Singaporeans on sharing health-data for precision medicine (PM) and identify suggestions for governance strategies.
Precision Medicine (PM) generally aims to use genomic analyses and data analytics to build a more detailed and tailored approach in predicting disease progression and treatment response for individual patients. For PM to work well, researchers would require access to comprehensive clinical data and biological material from many people.
PM initiatives typically seek broad consent when participants enrol and do not seek specific consent for every time the anonymised data or samples are shared with a new research team. In this study, a team of researchers led by external page Prof. Tamra Lysaght including Prof. E Shyong Tai, co-director of the Future Health Technologies (FHT) programme, studied ethical concerns Singaporeans have about sharing health-data for PM and identify suggestions for governance strategies.
The researchers conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three official languages of Singapore (English, Mandarin and Malay) and analysed with qualitative content and thematic analysis.
From the results, four key themes emerged: nuanced understandings of data security and data sensitivity; trades-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.
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.
The participants expressed conditional support for data sharing including sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Also, support was conditional on the perceived social value of the research and appropriate de-identification and data security processes.
Participants also expressed relatively high levels of trust in government authorities to ensure data security and suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore. There was general hesitancy to share data with industry and insurance companies but also recognition of the important role pharmaceutical companies and insurers play in drug development and healthcare.
The researchers suggest that maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research.
The paper external page "Who is watching the watchdog?: ethical perspectives of sharing health-related data for precision medicine in Singapore" is published in Research Square.