Broad Consent for Research on Biospecimens: The Views of Actual Donors at Four US Medical Centers

• Type of Material: Article
• Authors: Teddy D. Warner, University of New Mexico; Carol J. Weil, National Cancer Institute; Christopher Andry, Boston Medical Center; Howard B. Degenholtz, University of Pittsburgh; Lisa Parker, University of Pittsburgh; Latarsha J. Carithers, National Institutes of Health; Michelle Feige, Association for the Accreditation Human Research Protection Programs; David Wendler, National Institutes of Health; Rebecca Pentz, Emory University
• Language: English
• Date: 2018-04-01
• Publisher: SAGE Publications (UK and US): 12 month Embargo
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © The Author(s) 2018.
• Final Published Version (URL): http://dx.doi.org/10.1177/1556264617751204
• Title of Journal or Parent Work: Journal of Empirical Research on Human Research Ethics
• ISSN: 1556-2646
• Volume: 13
• Issue: 2
• Start Page: 115
• End Page: 124
• Grant/Funding Information: Source of Support: This study was funded by a contract with the National Cancer Institute to Frederick National Laboratories of LEIDOS, Inc., which in turn contracted with each study research site (University of New Mexico, Winship Cancer Institute of Emory University, University of Pittsburgh, and Boston Medical Center) for the parent Biospecimen Pre-analytical Variables (BPV) Program Study and in turn for the Ethical, Legal, and Social Implications sub-study to conduct the cancer patient donor interview study that is reported in this manuscript.
• Keywords: broad consent; Science & Technology; STORED BIOLOGICAL SAMPLES; survey; Life Sciences & Biomedicine; Medical Ethics; Ethics; Social Sciences - Other Topics; RESEARCH ETHICS; BIOBANK RESEARCH; PATIENTS ATTITUDES; INFORMED-CONSENT; informed consent; GENETIC RESEARCH; biospecimen donor; RESEARCH PARTICIPANTS; Social Sciences; PERSPECTIVES; CANCER-PATIENTS; ethical issues; RETURN; biobanking
• Research Categories: Biology, Genetics; Health Sciences, Oncology; Biology, General

Abstract

Commentators are concerned that broad consent may not provide biospecimen donors with sufficient information regarding possible future research uses of their tissue. We surveyed with interviews 302 cancer patients who had recently provided broad consent at four diverse academic medical centers. The majority of donors believed that the consent form provided them with sufficient information regarding future possible uses of their biospecimens. Donors expressed very positive views regarding tissue donation in general and endorsed the use of their biospecimens in future research across a wide range of contexts. Concerns regarding future uses were limited to for-profit research and research by investigators in other countries. These results support the use of broad consent to store and use biological samples in future research.