Attitudes about the use of newborn dried blood spots for research: a survey of underrepresented parents

Abstract

Objective: To identify the relative importance of factors that impact parents' attitudes toward use of their child's dried newborn blood spots for research purposes.

Methods: Respondents were parents aged 18 and older with at least one child aged 17 or younger born in Indiana visiting an urban pediatrics clinic. They were asked to rate the acceptability of hypothetical scenarios involving the research use of blood spots. Three pieces of information varied between the scenarios: 1) who would be conducting the research; 2) whether the child's identity would be linked to the spots; and 3) whether and how often the parents' consent would be sought before the research began.

Results: A total of 506 predominantly black and low-income parents completed the survey. The conjoint analysis model showed good fit (Pearson's R = 0.998, P < .001). The rank order of factors affecting parents' attitudes was: 1) consent (importance score = 64.9), 2) whether the child's identity was linked to the spot (importance score = 19.4), and 3) affiliation of the researcher using the spots (importance score = 14.6). Respondents preferred being asked for their consent each time their children's spots would be used. They preferred that the children's identity not be linked to the spots and that the research be conducted by university researchers, though these issues had less impact on attitudes than consent.

Conclusions: Parents strongly prefer that consent be sought for each use of their children's blood spots. These findings have implications for future research and policy-making decisions.

Keywords: bioethics; conjoint analysis; dried blood spots; newborn blood spots; newborn screening; residual blood spots.

Figure 1

Survey item wording. Researcher affiliation, identity linkage, and consent type were varied across the 13 scenarios (see Table 2 for listing of variable combinations reflected in each scenario).

Figure 2

Importance scores depicting extent to which these factors accounted for scenario acceptability ratings.

Figure 3

Part-worth utilities values conveying preferences for the attribute levels within each factor. Values below the baseline of 0 indicated non-preferred (unacceptable) attribute levels and values above the baseline of 0 indicate preferred (acceptable) attribute levels.