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

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...

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Autores principales: Raivola, Vera, Snell, Karoliina, Helén, Ilpo, Partanen, Jukka
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6871534/
https://www.ncbi.nlm.nih.gov/pubmed/31147625
http://dx.doi.org/10.1038/s41431-019-0434-1
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author Raivola, Vera
Snell, Karoliina
Helén, Ilpo
Partanen, Jukka
author_facet Raivola, Vera
Snell, Karoliina
Helén, Ilpo
Partanen, Jukka
author_sort Raivola, Vera
collection PubMed
description 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.
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spelling pubmed-68715342019-11-25 Attitudes of blood donors to their sample and data donation for biobanking Raivola, Vera Snell, Karoliina Helén, Ilpo Partanen, Jukka Eur J Hum Genet Article 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. Springer International Publishing 2019-05-30 2019-11 /pmc/articles/PMC6871534/ /pubmed/31147625 http://dx.doi.org/10.1038/s41431-019-0434-1 Text en © The Author(s) 2019 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/.
spellingShingle Article
Raivola, Vera
Snell, Karoliina
Helén, Ilpo
Partanen, Jukka
Attitudes of blood donors to their sample and data donation for biobanking
title Attitudes of blood donors to their sample and data donation for biobanking
title_full Attitudes of blood donors to their sample and data donation for biobanking
title_fullStr Attitudes of blood donors to their sample and data donation for biobanking
title_full_unstemmed Attitudes of blood donors to their sample and data donation for biobanking
title_short Attitudes of blood donors to their sample and data donation for biobanking
title_sort attitudes of blood donors to their sample and data donation for biobanking
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6871534/
https://www.ncbi.nlm.nih.gov/pubmed/31147625
http://dx.doi.org/10.1038/s41431-019-0434-1
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