Biobank Participants' Attitudes toward Requiring Understanding for Biobank Consent.
biobank research
biobanking
comprehension
human biospecimens
human research ethics
human subjects research
informed consent
precision medicine
understanding
Journal
Ethics & human research
ISSN: 2578-2363
Titre abrégé: Ethics Hum Res
Pays: United States
ID NLM: 101738005
Informations de publication
Date de publication:
Jan 2022
Jan 2022
Historique:
entrez:
22
12
2021
pubmed:
23
12
2021
medline:
25
12
2021
Statut:
ppublish
Résumé
Biobank participants often do not understand the information they are provided during the informed consent process. Ethicists and other stakeholders have disagreed, however, on the appropriate response to these failures in understanding. This paper describes an attempt to address this issue by conducting knowledge tests with 22 recent biobank enrollees, followed by in-depth, semistructured interviews about the goal of understanding in biobank consent. The interviews revealed that while biobank enrollees thought the information on the knowledge test was important, they did not think that performance on the test should affect whether individuals are permitted to enroll in a biobank. Three main themes emerged from the interviews: helping others by contributing to research is more important than understanding consent forms, less understanding is required because biobank-based research is low risk, and only a small amount of information in the consent form is really essential. These perspectives should be considered in discussing the ethics and governance of biobank consent processes.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
18-28Subventions
Organisme : Indiana University Precision Health Initiative (IU Grand Challenges Program)
Organisme : Indiana Clinical and Translational Sciences Institute
ID : UL1TR002529
Informations de copyright
© 2021 by The Hastings Center. All rights reserved.
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