Background: Given the absence of a systematic evaluation of general public attitudes towards the storage and use of newborn screening (NBS) blood samples for research in China, we firstly conducted this internet-based survey to explore these issues.
Methods: We conducted a national-based internet survey with self-designed questionnaire. We mainly studied three categories: 1) the willingness to have their childrens residual NBS samples used for research; 2) respondents willingness to have their childrens blood samples stored by the institutions; 3) the respondents knowledge on NBS. Spearman correlation test and multi-factor non-conditional logistic stepwise regression analysis was used to examine the variables affecting the respondents willingness to store and use NBS blood sample for research.
Results: The survey has a completion rate of 73%. And results of 1480 questionnaires were included into final analysis. If permission was obtained, 41.4% and 36.3% of the respondents will be very willing or somewhat willing to have their childrens blood samples used for research. However, if permission not obtained, remarkably more respondents were unwilling to have blood samples used for research study (somewhat unwilling, 29.2%; very unwilling, 18.7%). 82.7% of the respondents were willing to allow the institutions to store NBS samples; among them, 56.4% would allow the samples to be stored indefinitely. Multi-factor logistic regression analysis showed that respondents with higher education level and younger age will be more willing to have childrens newborn screening blood samples used for future research. Respondents were more likely to allow the samples to be stored if they had a high family income, with more children, and high awareness of knowledge on NBS.
Conclusions: In conclusion, our study is very important for understanding the general publics attitudes toward storage and use of residual NBS samples for research. Asking permission or consent is a very important issue regarding policies and procedures for NBS sample use.
Keywords: newborn screening, dried bloodspots, research, public health
27 - 29 Sep 2018
European Society for Paediatric Endocrinology