The view of Hong Kong parents on secondary use of dried blood spots in newborn screening program
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Published on: March 13, 2015
L L Hui1,2, E A S Nelson2, H B Deng2
1Department of Applied Biology and Chemical Technology, The Hong Kong Polytechnic University, Hung Hom, Hong Kong SAR, China.
Insights
Hong Kong parents generally accept the long-term storage and secondary use of residual dried blood spots (rDBS) for medical research. Key concerns include data privacy and misuse of genetic information, necessitating transparent governance and respect for parental autonomy.
Area of Science:
- Biomedical research ethics
- Public health policy
- Biobanking governance
Background:
- Residual dried blood spots (rDBS) from newborn screening are valuable research resources.
- Hong Kong lacks specific biobanking legislation.
- Understanding parental views is crucial for biobanking rDBS.
Purpose of the Study:
- To investigate Hong Kong Chinese parents' views on long-term storage and secondary use of rDBS.
- To identify parental concerns and acceptance factors for rDBS biobanking.
Main Methods:
- Mixed-method approach: focus groups (33 participants) and a large-scale survey (1012 participants).
- Framework analysis for qualitative data and multiple logistic regression for quantitative data.
- Study population included parents of children aged 0-3 years and expectant parents.
Main Results:
- Most parents were unaware of rDBS secondary use but largely accepted it for medical research.
- Concerns focused on data leakage and genetic information misuse; parents preferred explicit consent over opt-out.
- Parents born in mainland China showed higher support for biobanking rDBS compared to Hong Kong-born parents.
Conclusions:
- Hong Kong parents generally accept rDBS biobanking for research if autonomy and privacy are protected.
- Accountable governance and transparent access policies are essential for successful rDBS biobanks.
- Respecting parental consent and privacy is paramount for public trust in biobanking initiatives.
Background:
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.
Objective:
To study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese parents.
Methods:
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.
Results:
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.
Conclusion:
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.
