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Cited by 88Ethics in Clinical ResearchEthics and bioethics in healthcareBiomedical Ethics and Regulation

Public preferences regarding informed consent models for participation in population-based genomic research

Open access
Platt, Jodyn, Bollinger, Juli, Dvoskin, Rachel, Kardia, Sharon L.R., Kaufman, David·2014·Genetics in Medicine
DOI 10.1038/gim.2013.59PMC PMC3904287
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Abstract

Purpose Some large population biobanks that house biospecimens and health information for research seek broad consent from participants, whereas others reconsent for specific new studies. Understanding research participants' attitudes and preferences about broad and narrow consent may improve recruitment, retention, and public support. Methods An online survey was conducted among a representative sample of 4,659 US adults to examine relationships between consent preferences and demographic factors, beliefs about privacy and the value of research, and the perceived trustworthiness of researchers. Results Participants preferred broad consent (52%) over study-by-study consent models (48%). Higher preferences for study-by-study consent observed among black non-Hispanic respondents and respondents with lower income and education were explained by differences in the prevalence of one or more beliefs about the study. Respondents with fears about research and those who would feel respected if asked for permission for each research use preferred study-by-study consent. Preference for broad consent was related to the desire not to be bothered with multiple requests and the belief that the study could lead to improved treatments, cures, and lives saved. Conclusion These data suggest that support for broad consent is contingent on sufficient information about data use. Work with research participants and community leaders to understand, respond to, and influence opinions about a given, ongoing study may improve uptake of broad consent.

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  • In the Kaufman et al. subset analysis, demographic differences in consent preference were explained by beliefs about the study, with broad consent preferred by those who agreed the study could lead to improved treatments, felt contributing to society, found participation easy, and were bothered by per-use permission requests, and study-specific consent preferred by those concerned about研究人员 having

    “In this subset, older, male, and white non-Hispanic participants were more likely to prefer broad consent. However, these differences were explained by logistic regression models that included responses to questions regarding beliefs about the study: Broad consent was preferred by those who agreed that the study could lead to improved treatments, cures, and lives saved; that participating would”

    From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [110]

    The Results sections on beliefs and demographic factors (page not provided) support the stated associations between consent preference and beliefs about treatments, contributing to society, ease of participation, repeated permission requests, and researchers having samples and information. The Discussion says beliefs accounted for some demographic differences, including race and ethnicity, but not all: age and gender remained significant after adjustment. Thus the claim overstates that the demographic differences were explained. (LLM, conf=0.89)

    Experimental — accuracy not yet measured

  • In a more recent analysis of a subset of the Kaufman et al. survey (n = 3,347), 51% preferred broad consent and 49% preferred study-specific consent.

    “In a more recent publication (not cited in the NPRM), Kaufman and colleagues (110) winnowed the full data set from the 2007–2008 survey by various criteria and analyzed a subset (n = 3,347) in which 51% preferred broad consent and 49% preferred study-specific consent.”

    From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [110]

    The Analysis Methods section confirms that the authors selected a subset of 3,347 respondents after exclusions. It reports 52% preferring broad consent and 48% preferring study-by-study consent, not the cited 51% and 49%. No page number is available in our copy. (LLM, conf=0.90)

    Experimental — accuracy not yet measured

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Research works printed but not linked: 1

  1. [19]Cameron AC Trivedi PK Microeconometrics using Stata 2, revised, illustrated College Station, Tex Stata Press 2010 706

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Authors
Platt, J., Bollinger, J., Dvoskin, R., Kardia, S. L. R., & Kaufman, D.
Affiliations
  • University of Michigan (US)
  • Johns Hopkins University (US)
Corresponding author
Platt, Jodyn
ORCID
Venue
Genetics in Medicine
Publisher
Elsevier BV
Published
2014-01
Volume
16
Issue
1
Pages
11-18
ISSN
1098-3600 (ISSN-L)
DOI
10.1038/gim.2013.59
PMC
PMC3904287
OpenAlex
W2059543933
Cited by
88
References
17
Citations by year
2026: 4 · 2024: 3 · 2023: 6 · 2022: 10 · 2021: 6 · 2020: 6 · 2019: 9 · 2018: 4 · 2017: 3 · 2016: 17 · 2015: 12 · 2014: 7 · 2013: 1
FWCI
12.61
Type
journal article
Language
en
Open access
Licence
Locations
  • Genetics in Medicine (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • Kaiser Permanente
  • National Human Genome Research Institute (U01HG004206, 1 U01 HG004206-0)
  • National Institute of Child Health and Human Development
  • Eunice Kennedy Shriver National Institute of Child Health and Human Development (R01HD067264, 5-R01-HD-067264-02)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Health Sciences › Medicine › Physiology › Biomedical Ethics and Regulation
Keywords
informed consent, broad consent, population biobanks, genomic research participation, participant preferences, trust in scientists, research recruitment and retention
MeSH terms
Adult, Data Collection, Demography, Humans, Informed Consent, Public Opinion, United States, Cohort Studies, Biological Specimen Banks, Internet, Genomics, Genetic Research

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