Journal article

Biobank attributes associated with higher patient participation: a randomized study.

  • Gayet-Ageron A Division of Clinical Epidemiology, Department of Health and Community Medicine, University of Geneva Hospitals and Faculty of Medicine, 6 Rue Gabrielle Perret-Gentil, Geneva 14, Switzerland. angele.gayet-ageron@hcuge.ch.
  • Rudaz S Division of Clinical Epidemiology, Department of Health and Community Medicine, University of Geneva Hospitals and Faculty of Medicine, 6 Rue Gabrielle Perret-Gentil, Geneva 14, Switzerland.
  • Perneger T Division of Clinical Epidemiology, Department of Health and Community Medicine, University of Geneva Hospitals and Faculty of Medicine, 6 Rue Gabrielle Perret-Gentil, Geneva 14, Switzerland.
  • 2016-10-06
Published in:
  • European journal of human genetics : EJHG. - 2016
English The objectives of the study were to assess patients' intent to participate in a hospital-based biobank and to explore the factors associated with higher participation. A 23-item questionnaire was developed to survey a random sample of patients in a Swiss university hospital. Two vignettes describing hypothetical biobanks were incorporated in the survey and patients were asked whether they would agree to participate. Three factors were randomly manipulated in each vignette using a factorial design: cancer-oriented research vs general consent, one vs several reviews of the patient's chart, and genetic vs blood protein analyses (first vignette); blood sample vs oral swabbing, local vs international project, and a follow-up visit vs no visit (second vignette). Of the 1140 respondents, 73.6 and 69.6%, respectively, agreed to participate in the biobank. Biospecimen collection via oral swabbing, single chart review, and no follow-up were associated with higher participation. Participation was also higher among younger patients, Europeans, patients who had a positive opinion on research, and blood/organ donors. Biobanking was supported by a majority of patients, especially if biospecimens were collected through non-invasive techniques or if data collection was done once. The scope of consent, the scale of the project, or the tests performed on biospecimens did not influence participation.
Language
  • English
Open access status
bronze
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https://sonar.ch/global/documents/46799
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