The use of newborn screening dried blood spots for research: the parental perspective.

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.