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Updated: Nov 20, 2025

Working with Human Tissues for Translational Cancer Research
Published on: November 26, 2015
Electronic informed consent information for residual newborn specimen research: findings from focus groups with
Caren J Frost1, Erin P Johnson2, Brieanne Witte3
1College of Social Work, University of Utah, 395 E 1500 S, room 229A, Salt Lake City, UT, 84112, USA. caren.frost@socwk.utah.edu.
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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