Collecting Biospecimens and Obtaining Biobank Consent From Patients in an Academic Health Care Setting

Practical and Ethical Considerations

Bibliographic Data

ID21613937
AuthorsT J Kasperbauer (0000-0003-0216-7632, T.J. Kasperbauer is a postdoctoral fellow, Indiana University Center for Bioethics, Indiana University School of Medicine, Indianapolis, Indiana, corresponding author), Amy Waltz (A. Waltz is associate director, Office of Research Compliance, Indiana University, Indianapolis, Indiana ; [email protected]), Brenda Hudson (B. Hudson is director of strategic operations, Indiana Clinical and Translational Sciences Institute, Indianapolis, Indiana ; [email protected]), Bridget Hawryluk (0009-0002-6330-6114, B. Hawryluk is human-centered designer, Research Jam, Patient Engagement Core, Indiana Clinical and Translational Sciences Institute, Indianapolis, Indiana ; [email protected]), Courtney Moore (0000-0002-9436-4395, C. Moore is human-centered designer, Research Jam, Patient Engagement Core, Indiana Clinical and Translational Sciences Institute, Indianapolis, Indiana ; [email protected]), Karen Schmidt (0000-0002-3788-0983, K. Schmidt is project manager, Indiana University Center for Bioethics, Indiana University School of Medicine, Indianapolis, Indiana ; [email protected]), Peter H Schwartz (0000-0003-0863-0931, P.H. Schwartz is director, Indiana University Center for Bioethics, and associate professor of medicine, Indiana University School of Medicine, Indianapolis, Indiana ; [email protected])
Year2022
Volume97
Issue1
Pages62-68
Publication date2022-01-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueAcademic Medicine (JOURNAL)
Journal identifiersISSN: 1040-2446 • E-ISSN: 1938-808X
PublisherOxford University Press (OUP) (PUBLISHER)
DOI10.1097/acm.0000000000004418
PMID34524131
OpenAlexW3200670634
LanguageEN
Citations received1
References cited31

Academic health centers and health systems increasingly ask patients to enroll in research biobanks as part of standard care, raising important practical and ethical questions for integrating biobank consent processes into health care settings. This article aims to assist academic health centers and health systems considering implementing these integrated consent processes by outlining the 5 main issues—and the key practical and ethical considerations for each issue—that Indiana University Health and the Indiana Biobank faced when integrating biobank consent into their health system, as well as the key obstacles encountered. The 5 main issues to consider include the specimen to collect (leftover, new collection, or add-ons to clinical tests), whether to use opt-in or opt-out consent, where to approach patients, how to effectively use digital tools for consent, and how to appropriately simplify consent information

Biobank · Digital health · Ethical issues · Health care · Informed consent · MEDLINE · BRCA gene mutations in cancer · Ethics in Clinical Research · Genomics and Rare Diseases