Abstract
We developed a video and an app for obtaining consent about allowing newborn blood spots (NBS) to be used as biospecimen resources for biobanking. Newborn screening programs test for treatable diseases and leave residual biospecimens that can be used in future research activities. We conducted focus groups and interviews with three diverse communities to determine (a) how well the consent tools worked and (b) participant familiarity with NBS. Participants preferred the video and noted that they were unaware that NBS could be used for future research. Providing information about how biospecimens could be used was a key issue.
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Acknowledgments
We thank the Community Collaboration and Engagement Team at the University of Utah for their work on this project.
Funding
This project was funded by NIH grant no. R01HD082148.
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This article does not contain any studies with animals performed by any of the authors. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Frost, C.J., Johnson, E.P., Witte, B. et al. Electronic informed consent information for residual newborn specimen research: findings from focus groups with diverse populations. J Community Genet 12, 199–203 (2021). https://doi.org/10.1007/s12687-020-00496-y
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DOI: https://doi.org/10.1007/s12687-020-00496-y