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The Use of Newborn Screening Dried Blood Spots for Research

The Parental Perspective

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Abstract

Objective

To investigate the attitudes of Chinese parents regarding the storage of dried blood spots collected for newborn screening (NBS) and their use in research.

Methods

We conducted a hospital-based survey of parents and examined parental attitudes regarding (a) allowing NBS sample storage, (b) permitting use of children’s NBS samples for research with parental permission, and (c) permitting use of children’s NBS samples for research without parental permission.

Results

The response rate was 52 percent. Of parents surveyed, 68 percent would permit their infant’s NBS sample to be stored for at least some length of time. If permission is obtained, 69 percent of parents “strongly agreed” or “agreed” to permit use of the NBS sample for research. If permission is not obtained, only 14 percent of parents “strongly agreed” or “agreed.” There was no significant association between permitting use of NBS samples for research and parental gender, education, household income, number of children, or site of residence.

Conclusions

This is the first survey of Chinese parents regarding the use of NBS samples for different types of research, with results indicating that most parents would permit their infant’s sample to be stored and would support the use of NBS dried blood spots for research purposes.

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Notes

  1. This is not necessarily uncommon. In the United States, for example, parents who do not want their children’s samples used for research have the right to contact the state and request their children’s samples be destroyed (Therrell, Johnson, and Williams 2006; Lee 2007).

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Acknowledgements

The authors express their gratitude to all of the parents who participated in this study and thereby made this work possible.

Competing Interests

All authors declare that they have no competing interests and that the content of this article has not been influenced by the sponsors.

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Correspondence to Wen-Jun Tu.

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Gong, LM., Tu, WJ., He, J. et al. The Use of Newborn Screening Dried Blood Spots for Research. Bioethical Inquiry 9, 189–193 (2012). https://doi.org/10.1007/s11673-012-9368-9

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  • DOI: https://doi.org/10.1007/s11673-012-9368-9

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