title: The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.
abstract: Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have moral, religious, or cultural concerns about the future uses of their donations - concerns we call "non-welfare interests". The nature of non-welfare interests and their effect on willingness to donate to a biobank is not well understood.In order to better undersand the influence of non-welfare interests, we surveyed a national sample of the US population (in June 2014) using a probability-based internet panel. Logistic regression models assessed the demographic and attitudinal characteristics associated with participants' willingness to give consent for unspecified future uses of their donation when presented with 7 research scenarios that raised possible non-welfare interest concerns. Most people had non-welfare interests that significantly affect their willingness to donate to a biobank using blanket consent. Some non-welfare interests are associated with subgroups but others are not. A positive attitude toward biomedical research in general was associated with increased willingness to donate, while concerns about privacy and being African American were associated with decreased willingness.Non-welfare interests matter and can diminish willingness to donate to a biobank. Our data suggest that trust in research promotes willingness to donate. Ignoring non-welfare interests could erode this trust. Donors' non-welfare interests could be accommodated through greater transparency and easier access to information about the uses of donations.
authors.affiliation: Center for Bioethics and Social Sciences in Medicine (CBSSM), University of Michigan, 2800 Plymouth Road, North Campus Research Complex (NCRC), B16-419 W, Ann Arbor, MI, 48109-2800, USA. rdevries@med.umich.edu.
authors.forename: Raymond G
authors.initials: RG
authors.lastname: De Vries
authors.affiliation: Center for Ethics and Humanities in the Life Sciences, Michigan State University, C-223 East Fee Hall, 965 Fee Road Rm C-208, East Lansing, MI, 48824, USA.
authors.forename: Tom
authors.initials: T
authors.lastname: Tomlinson
authors.affiliation: Center for Statistical Consultation and Research, University of Michigan, 3550 CSCAR, Ann Arbor, MI, 48109-1070, USA.
authors.forename: H Myra
authors.initials: HM
authors.lastname: Kim
authors.affiliation: Center for Bioethics and Social Sciences in Medicine (CBSSM), University of Michigan, 2800 Plymouth Road, North Campus Research Complex (NCRC), B16-419 W, Ann Arbor, MI, 48109-2800, USA.
authors.forename: Chris D
authors.initials: CD
authors.lastname: Krenz
authors.affiliation: Center for Bioethics and Social Sciences in Medicine (CBSSM), University of Michigan, 2800 Plymouth Road, North Campus Research Complex (NCRC), B16-419 W, Ann Arbor, MI, 48109-2800, USA.
authors.forename: Kerry A
authors.initials: KA
authors.lastname: Ryan
authors.affiliation: Department of Sociology, Michigan State University, 509 E. Circle Dr., Rm 316 Berkey, East Lansing, MI, 48824-1111, USA.
authors.forename: Nicole
authors.initials: N
authors.lastname: Lehpamer
authors.affiliation: Department of Bioethics, Clinical Center, National Institutes of Health , 10 Center Drive, 1C118, Bethesda, MD, 20892-1156, USA.|Department of Psychiatry, University of Michigan, 4250 Plymouth Rd., Ann Arbor, 48109-2700, MI, USA.
authors.forename: Scott Y H
authors.initials: SY
authors.lastname: Kim
mesh_terms: D026686:Beneficence; D018070:Biological Specimen Banks / Q000941:ethics*; D035843:Biomedical Research; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007258:Informed Consent / Q000523:psychology*; D009042:Motivation; D018907:Privacy; D014019:Tissue Donors / Q000523:psychology* / Q000706:statistics & numerical data; D009927:Tissue and Organ Procurement / Q000941:ethics; D014481:United States / Q000453:epidemiology
keywords: Biobank; Biobank donors; Bioethics; Blanket consent; Moral concerns; Non-welfare interests; Research attitudes questionnaire; Willingness to donate