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


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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  1. 1.

    For more information, see the website of the Swiss Academy of Medical Sciences (, last retrieved on April 7th, 2019) and of Unimedsuisse, the Swiss Association of University Medicine (, last retrieved on April 7th, 2019).


  1. 1.

    World Medical Association (WMA). Declaration of Taipei on ethical considerations regarding health databases and biobanks. 67th WMA General Assembly, Taipei, Taiwan, October 2016. Accessed 13 Sept 2019.

  2. 2.

    Hansson MG, Dillner J, Bartram CR, Carlson JA, Helgesson G. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol. 2006;7:266–9.

  3. 3.

    Caulfield T. Biobanks and blanket consent: the proper place of the public good and public perception rationales. Kings Law Rev. 2007;18:209–26.

  4. 4.

    Hofmann B. Broadening consent – and diluting ethics? J Med Ethics. 2009;35:125–9.

  5. 5.

    Karlsen JR, Solbakk JH, Holm S. Ethical endgames: broad consent for narrow interests; open consent for closed minds. Cambridge Quart Healthcare Ethics. 2011;20:572–83.

  6. 6.

    Sheehan M. Can brad consent be informed consent? Public Health Ethics. 2011;4:226–35.

  7. 7.

    Lunshof JE, Chadwick R, Vorhaus DB, Church GM. From genetic privacy to open consent. Nat Rev Genet. 2008;9:406–11.

  8. 8.

    Kaye J. The tension between data sharing and the protection of privacy in genomics research. Annu Rev Genom Human Genet. 2012;13:415–31.

  9. 9.

    Steinbekk SK, Kåre Myskja B, Solberg B. Broad consent versus dynamic consent: is passive participation an ethical problem? Eur J Hum Genet. 2013;21:897–902.

  10. 10.

    Grady C, Eckstein L, Berkman B, Brock D, Cook-Deegan R, Fullerton SM, et al. Broad consent in research with biological samples: workshop conclusions. Am J Bioethics. 2015;15:34–42.

  11. 11.

    Master Z, Nelson E, Murdoch B, Caulfield T. Biobanks, consent and claims of consensus. Nature Methods. 2012;9:885–8.

  12. 12.

    Haddow G. “We only did it because he asked us”: gendered accounts of participation in a population genetic data collection. Soc Sci Med. 2009;69:1010–7.

  13. 13.

    810.30 Fedearl Act of 30 September 2011 on Research involving Human Beings (Human Research Act, HRA) Accessed 13 Sept 2019.

  14. 14.

    Mooser V, Currat C. The Lausanne Institutional Biobank: a new resource to catalyse research in personalized medicine and pharmaceutical sciences. Swiss Medical Wkly. 2014;144:w14033.

  15. 15.

    Shipman HE. Consent in interaction. Chichester: John Wiley & Sons, Ltd; 2013.

  16. 16.

    Godard B, Marshall J, Laberge C. Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE Project. Community Genet. 2007;10:147–58.

  17. 17.

    Meulenkamp TM, Gevers SK, Bovenberg JA, Koppelman GH, van Hylckama Vlieg A, Smets EM. Communication of biobanks’ research results: what do (potential) participants want? Am J Med Genet A. 2010;152A:2482–92.

  18. 18.

    Facio F, Brooks S, Loewenstein J, Green S, Biesecker L, Biesecker B. Motivators for participation in a whole-genome sequencing study: implications for translational genomics research. Eur J Hum Genet. 2011;19:1213–7.

  19. 19.

    Nobile H, Vermeulen E, Thys K, Bergmann MM, Borry P. Why do participants enrol in population biobank studies? A systematic literature review. Expert Rev Mol Diagn. 2013;13:35–47.

  20. 20.

    Ahram M, Othman A, Shahrouri M, Mustafa E. Factors influencing public participation in biobanking. Eur J Hum Genet. 2014;22:445–51.

  21. 21.

    Porteri C, Pasqualetti P, Togni E, Parker M. Public’s attitudes on participation in a biobank for research: an Italian survey. BMC Med Ethics. 2014;15:81.

  22. 22.

    Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W. Genomic research and wide data sharing: views of prospective participants. Genet Med. 2010;12:486–95.

  23. 23.

    Goddard KAB, Smith KS, Chen C, McMullen C, Johnson C. Biobank recruitment: motivations for nonparticipation. Biopreserv Biobank. 2009;7:119–21.

  24. 24.

    Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL. Public opinion about the importance of privacy in biobank research. Am J Hum Genet. 2009;85:643–54.

  25. 25.

    Siniscrope PS, Patten CA, Bonnema SM, Almquist JR, Smith CM, Beebe TJ, et al. Healthy women’s motivators and barriers to participation in a breast cancer cohort: a qualitative study. Ann Epidemiol. 2009;19:484–93.

  26. 26.

    Hallowell N, Cooke S, Crawford G, Lucassen A, Parker M, Snowdon C. An investigation of patients’ motivations for their participation in genetics-related research. J Med Ethics. 2010;36:37–45.

  27. 27.

    Lemke AA, Wolf WA, Herbert-Beirne J, Smith ME. Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genom. 2010;13:368–77.

  28. 28.

    Melas PA, Sjöholm LK, Forsner T, Edhborg M, Juth N, Forsell Y, et al. Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study. J Med Ethics. 2010;36:93–8.

  29. 29.

    Streicher SA, Sanderson SC, Wang Jabs E, Diefenbach M, Smirnoff M, Peter I, et al. Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study. J Community Genet. 2011;2:153–63.

  30. 30.

    Halverson CM, Ross LF. Incidental findings of therapeutic misconception in biobank-based research. Genet Med. 2012;14:611–5.

  31. 31.

    Hobbs A, Starkbaum J, Gottweis U, Wichmann HE, Gottweis H. The privacy-reciprocity connection in biobanking: comparing german with UK strategies. Public Health Genom. 2012;15:272–84.

  32. 32.

    Gaskell G, Gottweis H, Starkbaum J, Gerber GM, Broerse J, Gottweis U, et al. Publics and biobanks: Pan-European diversity and the challenge of responsible innovation. Eur J Hum Genet. 2013;21:14–20.

  33. 33.

    Khan A, Capps BJ, Sum MY, Kuswanto CN, Sim K. Informed consent for human genetic and genomic studies: a systematic review. Clin Genet. 2013;86:199–206.

  34. 34.

    Kleiderman E, Knoppers BM, Fernandez CV, Boycott KM, Ouellette G, Wong-Rieger D, et al. Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases. J Med Ethics. 2013;40:691–6.

  35. 35.

    McDonald JA, Vadaparampil S, Bowen D, Magwood G, Obeid JS, Jefferson M, et al. Intentions to donate to a biobank in national sample of African Americans. Public Health Genom. 2014;17:173–82.

  36. 36.

    Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3:77–101.

  37. 37.

    Flick U. Triangulation revisited: strategy of validation or alternative? J Theory Soc Behav. 1992;22:175–97.

  38. 38.

    Hermann H, Trachsel M, Biller-Andorno N. Accounting for intuition in decision-making capacity: rethinking the reasoning standard? Philosophy Psychiatry Psychol. 2017;24:313–24.

  39. 39.

    Kelly SE, Spector TD, Cherkas LF, Prainsack B, Harris JM. Evaluating the consent preferences of UK research volunteers for genetic and clinical studies. PLoS ONE. 2015.

  40. 40.

    Allen J, MacNamara B. Reconsidering the value of consent in biobank research. Bioethics. 2011;25:155–66.

  41. 41.

    Dixon-Woods M, Kocman D, Brewster L, Willars J, Laurie G, Tarrant C. A qualitative study of participants’ views on re-consent in a longitudinal biobank. BMC Med Ethics. 2017.

  42. 42.

    Locock L, Boylan A-MR. Biosamples as gifts? How participants in biobanking projects talk about participation. Health Expectations. 2016;19:805–16.

  43. 43.

    Sterckx S, Cockbain J, Howard H, Huys I, Borry P. “Trust us not something you can reclaim easily”: patenting in the field of direct-to-consumer genetic testing. Genet Med. 2013;15:382–7.

  44. 44.

    Husedzinovic A, Ose D, Schickhardt C, Fröhling S, Winkler EC. Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature. Eur J Hum Genet. 2015;23:1607–14.

  45. 45.

    Ridgeway JL, Han LC, Olson JE, Lackore KA, Koenig BA, Beebe TJ, et al. Potential bias in the bank: what distinguishes refusers, non-responders and participants in a clinic-based biobank? Public Health Genom. 2013;16:118–26.

  46. 46.

    De Vries RG, Tomlinson T, Kim HM, Krenz C, Haggerty D, Ryan KA, et al. Understanding the public’s reservations about broad consent and study-by-study consent for donations to biobank: results of a national survey. PLOS ONE. 2016.

  47. 47.

    Garret S, Dohan D, Koenig BA. Linking broad consent to biobank governance: support from a deliberative public engagement in California. Am J Bioethics. 2015;15:56–7.

  48. 48.

    Aguzzi A. Strong, generous support for medical research emerges from a large cohort of Swiss patients. Swiss Med Wkly. 2017.

  49. 49.

    Bochud M, Currat C, Chapatte L, Roth C, Mooser V. High participation rate among 25721 patients with broad age range in a hospital-based research project involving whole-genome sequencing – the Lausanne Institutional Biobank. Swiss Medical Wkly. 2017.

  50. 50.

    Hawkins AK, O’Doherty K. Biobank governance: a lesson of trust. N Genet Soc. 2010;29:311–27.

  51. 51.

    O’Doherty KC, Burgess MM, Edwards K, Gallagher RP, Hawkins AK, Kaye J, et al. From consent to governance: designing adaptive governance for genomic biobanks. Soc Sci Med. 2011;73:367–74.

  52. 52.

    Elger BS, Caplan AL. Consent and anonymization in research involving biobanks. Differing terms and norms present serious barriers to an international framework. EMBO Rep. 2006;7:661–6.

  53. 53.

    Strech D, Bein S, Brumhard M, Eisenmenger W, Glinicke C, Herbst T, et al. A template for broad consent in biobank research. Results and explanation of an evidence and consensus-based development process. Eur J Med Genet. 2016;59:295–309.

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This study was funded by a grant of the Research Commission of the Département universitaire de médecine et santé communautaires (DUMSC, CHUV) and carried out by the Institute of Humanities in Medicine (UNIL-CHUV), in collaboration with the Institute of Social and Preventive Medicine (UNIL-CHUVl) and The ColLaboratory (UNIL). The authors warmly thank the management team and all the collaborators of the Lausanne Institutional Biobank who made our study possible and provided essential insights into the issues discussed in this article. They also thank Murielle Bochud and Lazare Benaroyo, co-applicants of the study, for their support and collaboration in the design of the research, and Alain Kaufmann for his contribution in designing the study, preparing the fieldwork and analysing results.

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Correspondence to Gaia Barazzetti.

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Barazzetti, G., Bosisio, F., Koutaissoff, D. et al. Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data. Eur J Hum Genet (2020).

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