Electronic informed consent information for residual newborn specimen research: findings from focus groups with diverse populations

J Community Genet. 2021 Jan;12(1):199-203. doi: 10.1007/s12687-020-00496-y. Epub 2021 Jan 22.

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.

Keywords: Biobanking; Diverse populations; Electronic informed consent; Residual newborn specimens.