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

AJOB Empirical Bioethics
Armand H Matheny AntommariaIngrid A Holm

Abstract

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. 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. 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 partic...Continue Reading

References

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Citations

Jan 27, 2021·Journal of Human Genetics·Midori YamamotoAkira Hata
Feb 13, 2021·Personalized Medicine·Gabriela Chavarria-SoleyHenriette Raventós
May 21, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Christian M ParobekAdam K Lewkowitz
May 27, 2021·Annual Review of Genomics and Human Genetics·Jodell E LinderJosh F Peterson

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