The view of Hong Kong parents on secondary use of dried blood spots in newborn screening program

Residual dried blood spots (rDBS) from newborn screening programmes represent a valuable resource for medical research, from basic sciences, through clinical to public health. In Hong Kong, there is no legislation for biobanking. Parents' view on the retention and use of residual newborn blood...

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Bibliographic Details
Published in:	BMC medical ethics Vol. 23; no. 1; pp. 1 - 105
Main Authors:	Hui, L. L, Nelson, E. A.S, Deng, H. B, Leung, T. Y, Ho, C. H, Chong, J. S.C, Fung, G. P.G, Hui, J, Lam, H. S
Format:	Journal Article
Language:	English
Published:	London BioMed Central Ltd 01-11-2022 BioMed Central BMC
Subjects:	Altruism Biobanking Biobanks Blood Consent Cross-sectional studies Data privacy Diagnosis Ethical aspects Families & family life Family income Focus groups Genetic disorders Hospitals Infants (Newborn) Informed consent Informed consent (Medical law) Medical ethics Medical examination Medical screening Metabolism Metabolism, Inborn errors of Newborn babies Newborn screening Parental autonomy Parental consent Parents & parenting Privacy Questionnaires Research ethics Residual dried blood spots Retention Risk factors Hong Kong Hong Kong China China
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Summary:	Residual dried blood spots (rDBS) from newborn screening programmes represent a valuable resource for medical research, from basic sciences, through clinical to public health. In Hong Kong, there is no legislation for biobanking. Parents' view on the retention and use of residual newborn blood samples could be cultural-specific and is important to consider for biobanking of rDBS. To study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese parents. A mixed-method approach was used to study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese parents of children 0-3 years or expecting parents through focus groups (8 groups; 33 participants) and a survey (n = 1012, 85% mothers) designed with insights obtained from the focus groups. We used framework analysis to summarise the themes as supportive factors, concerns and critical arguments for retention and secondary use of rDBS from focus group discussion. We used multiple logistic regression to assess factors associated with support for retention and secondary use of rDBS in the survey. Both in focus groups and survey, majority of parents were not aware of the potential secondary use of rDBS. Overall secondary use of rDBS in medical research was well accepted by a large proportion of Hong Kong parents, even if all potential future research could not be specified in a broad consent. However parents were concerned about potential risks of biobanking rDBS including leaking of data and mis-use of genetic information. Parents wanted to be asked for permission before rDBS are stored and mainly did not accept an "opt-out" approach. The survey showed that parents born in mainland China, compared to Hong Kong born parents, had lower awareness of newborn screening but higher support in biobanking rDBS. Higher education was associated with support in rDBS biobanking only among fathers. Long-term storage and secondary use of rDBS from newborn screening for biomedical research and a broad consent for biobanking of rDBS are generally acceptable to Hong Kong parents given their autonomy is respected and their privacy is protected, highlighting the importance of an accountable governance and a transparent access policy for rDBS biobanks.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	1472-6939 1472-6939
DOI:	10.1186/s12910-022-00839-z