Attitudes of blood donors to their sample and data donation for biobanking.


Journal

European journal of human genetics : EJHG
ISSN: 1476-5438
Titre abrégé: Eur J Hum Genet
Pays: England
ID NLM: 9302235

Informations de publication

Date de publication:
11 2019
Historique:
received: 27 11 2018
accepted: 14 05 2019
revised: 23 04 2019
pubmed: 31 5 2019
medline: 21 7 2020
entrez: 1 6 2019
Statut: ppublish

Résumé

Modern biomedical and genetic studies require large study cohorts; blood donors have been suggested to represent an appropriate group for recruiting healthy cohorts. The Blood Service Biobank (BSB) in Finland was recently established to recruit blood donors willing to give broad biobank consent. The aim of the present study is to understand how the blood bank context influences views on donating samples and health data. We organised 61 interviews and 10 group discussions with current and potential blood donors. Using qualitative content analysis, we identified three discussion frameworks that summarise the results. We found that frequent blood donors associated the voluntary act of donation with caring for patients. The blood donation experience was considered to accommodate biobank participation, but also allowed critical observations on the integration of research data collection into blood donation. Research participants identified an important difference between the blood bank and biobank contexts. In the biobank context, the focus shifts from donating blood to patients into donating personal and genetic data for research use. Blood donors' anxiety over data use was balanced with their experience of the trustworthiness of the Blood Service. These experiences indicated that the new biobanking activity could be trusted to a familiar organisation. To build donors' trust, biobanks should invest in their institutional reputation, donor experience and dialogue with donors. These findings can be applied to other institutions that are considering setting up biobanks with broad consent for personal data use.

Identifiants

pubmed: 31147625
doi: 10.1038/s41431-019-0434-1
pii: 10.1038/s41431-019-0434-1
pmc: PMC6871534
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

1659-1667

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Auteurs

Vera Raivola (V)

Finnish Red Cross Blood Service, Helsinki, Finland.

Karoliina Snell (K)

Helsinki Collegium for Advanced Studies, University of Helsinki, Helsinki, Finland.

Ilpo Helén (I)

Department of Social Sciences, University of Eastern Finland, Helsinki, Finland.

Jukka Partanen (J)

Finnish Red Cross Blood Service, Helsinki, Finland. jukka.partanen@veripalvelu.fi.

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