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

Electronic informed consent information for residual newborn specimen research: findings from focus groups with diverse populations
Original Article
Caren J. Frost, Erin P. Johnson, Brieanne Witte, Louisa Stark, Jeff Botkin, Erin Rothwell
Journal of Community Genetics, 22 January 2021
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.