David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
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Journal of Bioethical Inquiry 9 (2):189-193 (2012)
ObjectiveTo investigate the attitudes of Chinese parents regarding the storage of dried blood spots collected for newborn screening (NBS) and their use in research.MethodsWe 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.ResultsThe 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.ConclusionsThis 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|
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References found in this work BETA
Denise Chrysler, Harry McGee, Janice Bach, Ed Goldman & Peter D. Jacobson (2011). The Michigan BioTrust for Health: Using Dried Bloodspots for Research to Benefit the Community While Respecting the Individual. Journal of Law, Medicine & Ethics 39 (s1):98-101.
Ellen Wright Clayton (2010). Currents in Contemporary Ethics. Journal of Law, Medicine & Ethics 38 (3):697-700.
Citations of this work BETA
Michael A. Ashby & Leigh E. Rich (2012). Signposts in a Familiar Land? Journal of Bioethical Inquiry 9 (2):119-124.
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