Literature DB >> 32086443

Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data.

Gaia Barazzetti1,2, Francesca Bosisio3,4, Daria Koutaissoff5, Brenda Spencer5.   

Abstract

Broad consent is increasingly recommended as an acceptable consent model for biobanking human samples and health data with a view to their future use in research. Empirical evidence on the practice of broad consent and its implementation in the hospital setting, however, is still very limited. We analyse and discuss results from a qualitative study of perceptions of a sample of patients and biobank recruiters regarding broad consent to participate in a hospital-based biobank for prospective research on genomic and health data. Our findings suggest that contextual and relational factors play an important role in the practice of broad consent, and illustrate that broad consent relies as much on intuition as on reasoning. Moreover, we show that seeking broad consent in the hospital affects patient-recruiter interaction and that "conditional" trust plays a significant role in broad-consent decision-making. In conclusion, we provide recommendations to improve patient autonomy in the context of hospital-based broad consent.

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Year:  2020        PMID: 32086443      PMCID: PMC7316733          DOI: 10.1038/s41431-020-0585-0

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  28 in total

1.  Can Broad Consent be Informed Consent?

Authors:  Mark Sheehan
Journal:  Public Health Ethics       Date:  2011-08-03       Impact factor: 1.940

2.  Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project.

Authors:  Béatrice Godard; Jennifer Marshall; Claude Laberge
Journal:  Community Genet       Date:  2007

Review 3.  Should donors be allowed to give broad consent to future biobank research?

Authors:  Mats G Hansson; Joakim Dillner; Claus R Bartram; Joyce A Carlson; Gert Helgesson
Journal:  Lancet Oncol       Date:  2006-03       Impact factor: 41.316

4.  Broadening consent--and diluting ethics?

Authors:  B Hofmann
Journal:  J Med Ethics       Date:  2009-02       Impact factor: 2.903

5.  "We only did it because he asked us": gendered accounts of participation in a population genetic data collection.

Authors:  Gillian Haddow
Journal:  Soc Sci Med       Date:  2009-08-08       Impact factor: 4.634

Review 6.  From genetic privacy to open consent.

Authors:  Jeantine E Lunshof; Ruth Chadwick; Daniel B Vorhaus; George M Church
Journal:  Nat Rev Genet       Date:  2008-05       Impact factor: 53.242

7.  Motivators for participation in a whole-genome sequencing study: implications for translational genomics research.

Authors:  Flavia M Facio; Stephanie Brooks; Johanna Loewenstein; Susannah Green; Leslie G Biesecker; Barbara B Biesecker
Journal:  Eur J Hum Genet       Date:  2011-07-06       Impact factor: 4.246

8.  Biobanks, consent and claims of consensus.

Authors:  Zubin Master; Erin Nelson; Blake Murdoch; Timothy Caulfield
Journal:  Nat Methods       Date:  2012-09       Impact factor: 28.547

Review 9.  Why do participants enroll in population biobank studies? A systematic literature review.

Authors:  Hélène Nobile; Eric Vermeulen; Kristof Thys; Manuela M Bergmann; Pascal Borry
Journal:  Expert Rev Mol Diagn       Date:  2013-01       Impact factor: 5.225

10.  Communication of biobanks' research results: what do (potential) participants want?

Authors:  Tineke M Meulenkamp; Sjef K Gevers; Jasper A Bovenberg; Gerard H Koppelman; Astrid van Hylckama Vlieg; Ellen M A Smets
Journal:  Am J Med Genet A       Date:  2010-10       Impact factor: 2.802

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  1 in total

1.  Patients' decision to contribute to a biobank in the light of the patient-recruiter relationship-a qualitative study of broad consent in a hospital setting.

Authors:  Francesca Bosisio; Gaia Barazzetti; Daria Koutaissoff; Brenda Spencer
Journal:  J Community Genet       Date:  2020-08-10
  1 in total

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