Dried blood spot cards contain tiny blood samples from newborns that allow for early detection of disease. They also contain valuable information for medical research. But using the cards for research is not a given. Parents worry that if the cards are shared or acquired by third parties, the data could be used against the child in future, for instance, by being denied employment or insurance coverage. And who controls the data? What if parents change their minds? Similarly, the COVID-19 pandemic raised concerns about individual health privacy when people were asked to reveal personal information, such as their vaccination records and recent contacts. In both cases, public health could benefit from sharing the health information. Dr Olivia Ngan Miu-yung of HKUMed and Professor Jack Zhenhui Jiang, Padma Privacy, consent and governance concerns Dr Ngan interviewed parents and healthcare providers about the use, storage and sharing of dried blood spot cards and found that while parents were often willing to voluntarily have their children screened, tensions arose around sharing the cards for other purposes. There were worries about future genetic discrimination against their child and the possibility that parental consent could conflict with their children’s future wishes. Misuse is also a concern – in some places overseas, data has been used without consent. and Hari Harilela Professor in Strategic Information Management of the HKU Business School, have therefore each looked at the concerns and how to overcome them. Inducing social benefit feature Professor Jiang was interested in the conditions under which people are likely, or not, to share information. He set up two randomised experiments to study patient data donations relating to general medical research and COVID-19 and found participants were very reluctant to share sensitive information, such as details about blood tests, medicines taken, vaccinations and the like. “This kind of reluctance is having an impact. Several non-profit organisations overseas that collected people’s health data for research purposes have had to close because donations dropped,” he said. But he also looked at how to reverse that response and found, like Dr Ngan, that willingness to donate increases when people can control who accesses their data, can approve how it is used and can retract their donation at any time. Awareness of societal benefits also increased willingness to donate. When people were explicitly told their donation would benefit medicine or the community, they were more willing to donate. Similarly, if benefit was implied by including images of patients in hospital alongside the data donation request, they were also more willing to donate. Generic images of a landscape that were also used in the experiment had no such effect. “Every patient’s data is important, and we hope they can share their data. In general, if you give people proper privacy controls and you induce the idea of People understandably have privacy fears about sharing their medical data, even when others could benefit. HKU scholars have looked at how these concerns can be allayed while still protecting privacy. Giving for the Greater Good HKU Bulletin | Nov 2025 Cover Story 12 13 Sharing on social media Professor Jack Zhenhui Jiang has also looked at privacy and willingness to share in a social media context. In a frequently cited paper, he found people were more willing to share personal information if they were anonymous, but not if the other person was anonymous. Being asked too many questions about oneself decreased willingness, but communicating in a rich media environment, such as using video or voice rather than plain text, increased it. Some subjects simply opted to misrepresent themselves – tell lies – rather than opt out of sharing information. The study was done a decade ago and he now sees a minefield for privacy concerns given the ease with which people share their voices and images (and even those of their children) on social media and AI platforms. This information can now be easily manipulated, or at the least be used for AI training. “Privacy is a significant issue in the digital age, which is inevitable because information can be so easily shared, retrieved and misused,” he said. While Hong Kong has the Personal Data (Privacy) Ordinance, Dr Ngan said it is not explicit in preventing discrimination based on genetic data. “This framework may not fully address the unique risks associated with genetic information,” she said. One solution is to pseudonymise the data by storing identifiers separately from the samples and assigning a unique ID to the sample. Although this requires stringent data management protocols, parents were more willing to share information if it was pseudonymised, they were asked permission each time the data was used, and they had the right to withdraw the data at any time. “Hong Kong parents and healthcare professionals generally express positive attitudes toward using dried blood spot cards to advance research, but with varying degrees of concern about privacy, consent and longterm data governance. There is a pressing need for participatory research in this area,” she said. societal benefits, they will be more willing to share,” he said, adding the same could apply to other areas, such as requests to share diagnostic data from one’s phone or computer. Professor Jack Zhenhui Jiang This kind of reluctance is having an impact. Several nonprofit organisations overseas that collected people’s health data for research purposes have had to close because donations dropped.
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