Electronic informed consent information for residual newborn specimen research: findings from focus groups with diverse populations.
J Community Genet
; 12(1): 199-203, 2021 Jan.
Article
em En
| MEDLINE
| ID: mdl-33481187
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.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Tipo de estudo:
Diagnostic_studies
/
Qualitative_research
Idioma:
En
Revista:
J Community Genet
Ano de publicação:
2021
Tipo de documento:
Article
País de afiliação:
Estados Unidos