Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2017 Nov 17;18(1):63.
doi: 10.1186/s12910-017-0223-8.

Biobanking in Israel 2016-17; expressed perceptions versus real life enrollment

Gideon Koren  1   2 , Daniella Beller  3 , Daphna Laifenfeld  4 , Iris Grossman  4 , Varda Shalev  3   5
Affiliations

Biobanking in Israel 2016-17; expressed perceptions versus real life enrollment

Gideon Koren et al. BMC Med Ethics. .

Abstract

Background: As part of the preparations to establish a population-based biobank in a large Israeli health organization, we aimed to investigate through focus groups the knowledge, perceptions and attitudes of insured Israelis, toward biobanking, and then, after input from focus groups' participants, to empirically assess the impact of a revised recruitment process on recruitment rates.

Methods: 1) Six Focus group discussions were conducted (n = 10 per group) with individuals who had routine blood laboratory tests taken in the last 2 years. 2) After addressing the issues raised in the focus groups and revising the recruitment process, individuals undergoing routine blood tests in phlebotomy clinics (N = 10,262) were invited to participate in the future biobank.

Results: At the outset of the focus groups there was an overall positive response to the prospect of a population-based biobank. Concerns revolved around infringement on privacy, fears of the "big brother"(e.g. insurance companies), and anxiety about inequality. Reaction to the language of the informed consent document revolved around concerns over ability to maintain anonymity, to withdraw consent, involvement of commercial entities, and the general tenor of the informed consent, which was perceived as legalistic and unilateral. In general, the longer participants were exposed to discussion about the biobank, the less likely they were to consent to sign in. Overall, only 20% (12) of the 60 participants stated they would agree to sign in by the end of the 2 hour group session. The feedback obtained from the focus groups was used in the second stage ("real life") of the study. A team of recruiters received extensive training to enable fruitful discussion and a detailed explanation to questions and concerns raised during the recruitment process. During the second stage of the study, after revising the consent form and training recruiters, a 53% consent rate was observed among 10,262 participants, more than 4 fold higher than estimated at the focus group stage.

Conclusions: The qualitative focus group research helped identify important perceptions and concerns, which were subsequently addressed in the revised consent form and in the discussion the recruiters had with potential biobank donors.

Keywords: Biobanking; Informed consent form; Population based biobanking; Risk perception; Volunteers.

PubMed Disclaimer

Conflict of interest statement

Ethics approval and consent to participate

Approval was received from Assuta Hospital, Tel Aviv, Israel. All participants gave written informed consent to participate.

Consent for publication

Not applicable.

Competing interests

The study was supported financially by Teva Inc. and Pfizer Inc. The funding bodies did not participate in the design of the study or interpretation of the results. Teva Inc. reviewed the manuscript and suggested revisions to language and references, but not to interpretation of results.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Rates of recruitment and refusal in the real life experiment
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. Gottweis H, Chen H, Starkbaum J. Biobanks and the phantom public. Hum Genet. 2011;130:433–440. doi: 10.1007/s00439-011-1065-y. - DOI - PubMed
    1. D'Abramo F, Schildmann J, Vollmann J. Research participant’ perceptions and views on consent for biobank research: a review of empirical data and ethical analysis. BMC Med Ethics. 2015;16:60. doi: 10.1186/s12910-015-0053-5. - DOI - PMC - PubMed
    1. Luque JS, Quinn GP, Montel-Ishino FS, Arevalo M, Bynum SA, Noel Thomas S, Wells KJ, Gwede CK, Meade CD. Formative research on perceptions of biobanking: what community members think. J Canc Educ. 2012;27:91–99. doi: 10.1007/s13187-011-0275-2. - DOI - PMC - PubMed
    1. Tupasela A, Shivo S, et al. Attitudes towards biomedical use of tissue sample collections, consent and biobanks among Finns. Scan J Public Health. 2010;38:45–52. doi: 10.1177/1403494809353824. - DOI - PubMed
    1. Kettis-Lindblad A, Ring L, et al. Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: a population based study. Scand J Public Health. 2007;35:148–156. doi: 10.1080/14034940600868572. - DOI - PubMed

LinkOut - more resources