To Share or Not to Share?

On paper, the Care.data project proposed by England’s National Health Service in 2013 should have been lauded as a step forward for healthcare. The national central database of medical records would have served as a rich repository of health data, potentially allowing for the development of more effective medical treatments.

In reality, however, the programme was met with distrust from the public over the lack of clear communication about how their health data would be used or who it would be shared with. After much criticism, Care.data was abandoned just three years later.

What happened with Care.data is a cautionary tale about the importance of good communication and the need to understand public expectations around sharing health data. The latter is particularly essential given that data-driven initiatives typically operate on broad consent, which means participants consent once to their data being used across an unspecified range of future projects rather than consent being sought each time information is used or shared.

Precision medicine, which aims to use genetic, health and lifestyle information to provide patients with tailored diagnosis and treatment, adopts a similar one-time broad consent framework for data collection. While precision medicine may be the future of healthcare,  advances in research and participation in these programmes now rely upon their citizens’  willingness to share their personal health data. It is therefore more important than ever to understand how people weigh the benefits and risks of data sharing.

A Balancing Act

Just as Asian genetics data are under-represented in public genomic databases, so too are Asian perspectives and concerns surrounding the sharing of health data, explained Assistant Professor Tamra Lysaght, Director of Research and Phase Director of the Health Ethics, Law and  Professionalism programme at the Yong Loo Lin School of Medicine at the Centre for Biomedical  Ethics, National University of Singapore. However, unravelling the views of such an ethnically and culturally diverse region is no easy feat.

Lysaght and her team of bioethics researchers have made headway into this enormous task by tapping into Singapore’s multi-ethnic population to gain diverse views on Singaporean attitudes and ethical concerns towards health data sharing for precision medicine initiatives. In a 2020  study published in BMC Medical Ethics_1,_ the team documented the results of seven focus groups conducted in English, Mandarin and Malay, the country’s three major spoken languages.

Without prompting, the participants, most of whom held university degrees, voiced sophisticated understandings of the trade-offs between the risks and benefits of data sharing for precision medicine. Despite expressing concerns about data breaches and misuse of sensitive information, most participants were comfortable with the idea of sharing health data because of the potential value to society and the ‘greater good,’ as they frequently termed it. “The participants spontaneously started talking about the constant risk of data breaches, and the inability to guarantee that the data will never be inadvertently or deliberately leaked,”  Lysaght said. “However, they could also see a lot of good that can come from these  programmes.”

Who Watches the Watchdog?

Discussions about who the participants were willing to trust with their health data were similarly nuanced. Recognising the potential value of their work, participants held research and healthcare institutions in high regard for handling health information. Insurance companies, on the other hand, were largely seen as capable of misusing sensitive genetic data.

“Because precision medicine data involves genome sequencing data and potential genetic susceptibility to diseases, there were a lot of concerns about the data being used in ways that could be harmful to individuals,” Lysaght explained. For data security, participants were particularly trusting of government agencies, frequently mentioning the Ministry of Health. This confidence in government, Lysaght said, contrasts with findings in other countries.  The team suggests that such attitudes may stem from the Singaporean government’s swift and robust handling of prior data breaches, like the unauthorised access to 1.6 million records at  SingHealth in 2018 and the leaking of more than 14,000 names on an HIV registry in 2019. They may also reflect the unique cultural norms and relationship between Singapore’s population and government.

Despite this general trust, however, participants expressed some unease that government agencies could still potentially misuse health data. To counter this, they suggested that having an independent organisation that oversees data sharing could further strengthen public trust in  Singapore’s precision medicine programme. Overall, the participants preferred a multi-tiered strategy for data sharing. Such an approach could include allowing participants to withdraw from precision medicine programmes, regulations to restrict who can use the data and what the data can be used for, and independent oversight. Furthermore, existing safeguards such as de-identified data and only allowing trained personnel access to such data may also ensure privacy preservation.

While more research is needed for ways to address the ethical and moral concerns around data sharing in the region, Lysaght’s study provides important initial insight that could help governments improve trust in precision medicine programmes and bring about the real benefits of data-driven medical research.

References:

Lysaght, T., Ballantyne, A., Xafis, V., Ong, S., Schaefer, G.O., et al. “Who is watching the  watchdog?”: ethical perspectives of sharing health‑related data for precision medicine in  Singapore. BMC Medical Ethics 21, 118 (2020).