“Using dried blood spots beyond newborn screening – is Hong Kong ready?”: navigating the intersection of innovation readiness, privacy concerns, and Chinese parenting culture

Abstract

Background: Newborn screening programmes offer an opportunity to obtain dried blood spots (DBS) cards that contain a wealth of biological information that can be stored for long periods and have potential benefits for research and quality assurance. However, the storage and secondary uses of DBS cards pose numerous ethical, clinical, and social challenges. Empirical research exploring public attitudes is central to public policy planning as it can indicate whether or not there is broad public support, define public concerns, and ascertain the circumstances required to alleviate concerns and ensure support. This study aims to describe the clinical experience and attitudes towards newborn screening and investigate the perceptions and expectations of Hong Kong parents and healthcare providers regarding the retention of DBS cards and their usage for research. Methods: We conducted semi-structured in-person interviews with 20 parents and healthcare providers in Hong Kong. Thematic analysis was conducted. Results: Awareness of the significant research value of secondary uses of dried blood spot cards is low. Parents and healthcare providers support the storage and secondary uses of DBS cards with some concerns, including privacy and confidentiality breaches, the risk of discrimination or stigmatisation based on genetic information, and their inability to oversee the use of their child’s biospecimen. Parents, however, prioritise their child’s health over privacy concerns and support identifiable storage using pseudonymity to gain more information about their children's health. Conclusion: Child information takes precedence over potential concerns over privacy, underscoring the significance of engaging patients and the public in shaping public policy related to biobanking and healthcare research, in line with cultural and social values.