Not without my permission: parents' willingness to permit use of newborn screening samples for research

State newborn screening (NBS) programs are considering the storage and use of NBS blood samples for research. However, no systematic assessment of parents' attitudes exists.

We conducted an Internet-based survey of a nationally representative parent sample. We examined parents' willingness (1) to permit use of their children's NBS samples for research with/without their permission and (2) to allow NBS sample storage. Using bivariate and multinomial logistic regression, we examined the association of parent and child characteristics with parents' willingness to permit NBS sample storage and use for research, respectively.

The response rate was 49.5%. If permission is obtained, 76.2% of parents were 'very or somewhat willing' to permit use of the NBS sample for research. If permission is not obtained, only 28.2% of parents were 'very or somewhat willing'. Of parents surveyed, 78% would permit storage of their children's NBS sample. Parents who refused NBS sample storage were also less willing to permit use of the NBS sample for research.

Three-quarters of parents would permit use of their children's NBS samples for research - if their permission is obtained. Parents not in favor of storing NBS samples often opposed the use of NBS samples for research.