Parents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey.

Antommaria AHM1,2, Brothers KB3, Myers JA3, Feygin YB3, Aufox SA4, Brilliant MH5, Conway P6, Fullerton SM7, Garrison NA8,9, Horowitz CR10, Jarvik GP11, Li R12, Ludman EJ13, McCarty CA14, McCormick JB15, Mercaldo ND16, Myers MF2,17, Sanderson SC18, Shrubsole MJ19, Schildcrout JS20, Williams JL21, Smith ME22, Clayton EW23, Holm IA24,25.

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Abstract

BACKGROUND:

The factors influencing parents' willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents' willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness.

METHODS:

This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of three consent and data-sharing scenarios.

RESULTS:

In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50-59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one's child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity.

CONCLUSIONS:

Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks.