Purpose: Ethical and policy considerations are associated with the research use of residual dried blood spots (DBS) collected as part of nationwide mandatory newborn screening. The objective of this study is to quantify the relative importance of the following considerations to parents' attitudes about the research use of their children's residual DBS: 1) who is conducting the research; 2) whether the child's identity is linked to his/her DBS; and 3) whether consent is sought from parents for the research.
Method: Survey respondents rated the acceptability of 13 hypothetical research scenarios involving the use of DBS samples in which several factors were systematically varied, including: whether university researchers or a drug company would be conducting the research using the DBS; whether their child's identity would be linked to the DBS; and whether the caregivers' consent would be sought before the research began, and if so, whether that consent would be sought only one time for all research involving the DBS or sought for each and every study using their child's DBS. Eligible respondents were 18 or older, fluent in English, and primary caregiver to at least one child under 17 years old born in Indiana.
Result: The sample (N=506) included caregivers 18-60 years old, who were predominantly mothers. Full-profile ratings-based conjoint analysis indicates strong model fit (Pearson's R=.998, p<.001). Consent emerged as the most important factor in caregivers' ratings of acceptability of scenarios presented in the survey (importance score=64.9). Second most important in acceptability ratings was whether their child's identity was linked to the DBS (importance score=19.4), followed by the researcher who would be using their child's DBS (importance score of=14.6). Part-worth utilities show that respondents preferred being asked for their consent for each study in which their child's DBS would be used, that the child's identity not be linked the DBS, and that the researchers be from a university.
Conclusion: This research quantifies the relative importance of factors impacting what caregivers' consider acceptable/unacceptable parameters for using their children's DBS in research. Consent emerged as the most important factor driving attitudes in this study. Entities overseeing the storage of residual DBS, researchers intending to use DBS, as well as policymakers should consider adopting consent protocols.