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Journal of Bioethical Inquiry

, Volume 9, Issue 2, pp 189–193 | Cite as

The Use of Newborn Screening Dried Blood Spots for Research

The Parental Perspective
  • Li-Ming Gong
  • Wen-Jun Tu
  • Jian He
  • Xiao-Dong Shi
  • Xin-Yu Wang
  • Ying Li
Original Research

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.

Keywords

Newborn screening Dried blood spots Storage Research Parents 

Notes

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.

References

  1. Burgess, E., N. Singhal, H. Amin, D.D. McMillan, and H. Devrome. 2003. Consent for clinical research in the neonatal intensive care unit: A retrospective survey and a prospective study. Archives of Disease in Childhood. Fetal and Neonatal Edition 88(4): F280–F286.PubMedCrossRefGoogle Scholar
  2. Chen, R., and D. Guo. 1983. The initiation of neonatal programmed in Shanghai, China. In Neonatal screening, ed. H. Naruse and M. Irie, 483–484. Amsterdam: Excerpta Medica.Google Scholar
  3. Chrysler, D., H. McGee, J. Bach, E. Goldman, and P.D. Jacobson. 2011. The Michigan BioTrust for Health: Using dried bloodspots for research to benefit the community while respecting the individual. The Journal of Law, Medicine & Ethics 39(Supplement1): 98–101.CrossRefGoogle Scholar
  4. Clayton, E.W. 2010. Currents in contemporary Ethics. State run newborn screening in the genomic era, or how to avoid drowning when drinking from a fire hose. The Journal of Law, Medicine & Ethics 38(3): 697–700.CrossRefGoogle Scholar
  5. Davis, M.M., and K. Fant. 2005. Coverage of vaccines in private health plans: What does the public prefer? Health Affairs (Millwood) 24(3): 770–779.CrossRefGoogle Scholar
  6. Duquette, D., A.P. Rafferty, C. Fussman, J. Gehring, S. Meyer, and J. Bach. 2011. Public support for the use of newborn screening dried blood spots in health research. Public Health Genomics 14(3): 143–152.PubMedCrossRefGoogle Scholar
  7. Haga, S.B. 2010. Analysis of educational materials and destruction/opt-out initiatives for storage and use of residual newborn screening samples. Genetic Testing and Molecular Biomarkers 14(5): 587–592.PubMedCrossRefGoogle Scholar
  8. Klein, J.D., R.K. Thomas, and E.J. Sutter. 2007. Self-reported smoking in online surveys: Prevalence estimate validity and item format effects. Medical Care 45(7): 691–695.PubMedCrossRefGoogle Scholar
  9. Lee, C.M. 2007. Screenings at risk: Genetic tests on infants lauded, but privacy issues cloud future. Milwaukee Journal Sentinel, November 25. http://www.jsonline.com/features/29332674.html.
  10. Neidich, A.B., J.W. Joseph, C. Ober, and L.F. Ross. 2008. Empirical data about women’s attitudes towards a hypothetical pediatric biobank. American Journal of Medical Genetics. Part A 146(3): 297–304.PubMedCrossRefGoogle Scholar
  11. Olney, R.S., C.A. Moore, J.A. Ojodu, M.L. Lindegren, and W.H. Hannon. 2006. Storage and use of residual dried blood spots from state newborn screening programs. The Journal of Pediatrics 148(5): 618–622.PubMedCrossRefGoogle Scholar
  12. Stenson, B.J., J.C. Becher, and N. McIntosh. 2004. Neonatal research: The parental perspective. Archives of Disease in Childhood. Fetal and Neonatal Edition 89(4): F321–F323.PubMedCrossRefGoogle Scholar
  13. Tarini, B.A., A. Goldenberg, D. Singer, S.J. Clark, A. Butchart, and M.M. Davis. 2010. Not without my permission: Parents’ willingness to permit use of newborn screening samples for research. Public Health Genomics 13(3): 125–130.PubMedCrossRefGoogle Scholar
  14. Therrell, B.L., A. Johnson, and D. Williams. 2006. Status of newborn screening programs in the United States. Pediatrics 117(5 Part 2): S212–S252.PubMedGoogle Scholar
  15. Tu, W., J. He, F. Dai, X. Wang, and Y. Li. 2011. Impact of inborn errors of metabolism on admission in a neonatal intensive care unit—a prospective cohort study. Indian Journal of Pediatrics 10. doi: 10.1007/s12098-011-0464-3.
  16. Waisbren, S.E., S. Albers, S. Amato, et al. 2003. Effect of expanded newborn screening for biochemical genetic disorders on child outcomes and parental stress. Journal of the American Medical Association 290(19): 2564–2572.PubMedCrossRefGoogle Scholar
  17. Zhan, J.Y., Y.F. Qin, and Z.Y. Zhao. 2009. Neonatal screening for congenital hypothyroidism and phenylketonuria in China. World Journal of Pediatrics 5(2): 136–139.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2012

Authors and Affiliations

  • Li-Ming Gong
    • 1
  • Wen-Jun Tu
    • 2
  • Jian He
    • 2
  • Xiao-Dong Shi
    • 3
  • Xin-Yu Wang
    • 4
  • Ying Li
    • 4
  1. 1.Key Laboratory of Cell EngineeringHospital of Zunyi Medical CollegeZunyiChina
  2. 2.Center for Clinical Laboratory DevelopmentChinese Academy of Medical Science and Peking Union Medical CollegeBeijingPeople’s Republic of China
  3. 3.China Rehabilitation Research CenterBeijingChina
  4. 4.Department of PediatricsBeijing Haidian Maternal and Child Health HospitalBeijingChina

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