Assessing the understanding of biobank participants

K. E. Ormond, A. L. Cirino, I. B. Helenowski, R. L. Chisholm, W. A. Wolf

Research output: Contribution to journalArticlepeer-review

107 Scopus citations

Abstract

Biobanks have been developed as a tool to better understand the genetic basis of disease by linking DNA samples to corresponding medical information. The broad scope of such projects presents a challenge to informed consent and participant understanding. To address this, 200 telephone interviews were conducted with participants in the NUgene Project, Northwestern University's biobank. Interviews included a modified version of the "quality of informed consent measure" (QuIC) and semi-structured questions which were analyzed thematically for 109 of the interviews. The QuIC, originally applied to cancer clinical trials, objectively assessed some of the components of informed consent for a biobank, and interview questions provided rich data to assist in interpreting participant understanding. The best understood domains included: the nature of the study, benefit to future patients, and the voluntary nature of participation. Lower knowledge scores included: potential risks and discomforts, experimental nature of the research, procedures in the event of study-related injury, and confidentiality issues. Qualitatively, confidentiality protections of the study were described as good by most (>50%). Although some cited concerns with employer (12%) or insurance discrimination (25%), most considered the risks to privacy low (25%) or none (∼60%). Only 10% of participants explicitly stated they had no expectation for personal benefit, and when asked whether they expected to be contacted with study results, respondents were split between having no expectation (39%), being hopeful for results (37%) and expecting to be contacted with results (12%). These findings are informative to those establishing and implementing biobanks, and to the IRBs reviewing such studies.

Original languageEnglish (US)
Pages (from-to)188-198
Number of pages11
JournalAmerican Journal of Medical Genetics, Part A
Volume149
Issue number2
DOIs
StatePublished - Feb 2009

Keywords

  • Biobank
  • Confidentiality
  • DNA bank
  • Disclosure
  • Ethics
  • Genebank
  • Genetic database
  • Genetic research
  • Informed consent
  • Recontact
  • Research results
  • Therapeutic misconception

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

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