Hypothetical and factual willingness to participate in biobank research
International audience In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. Surveys on willingness to participate in research may not always predict actual participation rates, however. We compared hypothetical willingness as estimated in eleven sur...
Published in: | European Journal of Human Genetics |
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ftccsdartic:oai:HAL:hal-00558089v1 2023-05-15T16:49:56+02:00 Hypothetical and factual willingness to participate in biobank research Johnsson, Linus Helgesson, Gert Rafnar, Thorunn Halldorsdottir, Ingibjorg Kee-Seng, Chia Eriksson, Stefan Hansson, Mats G. Uppsala University 2010-07-21 https://hal.archives-ouvertes.fr/hal-00558089 https://hal.archives-ouvertes.fr/hal-00558089/document https://hal.archives-ouvertes.fr/hal-00558089/file/PEER_stage2_10.1038%252Fejhg.2010.106.pdf https://doi.org/10.1038/ejhg.2010.106 en eng HAL CCSD Nature Publishing Group info:eu-repo/semantics/altIdentifier/doi/10.1038/ejhg.2010.106 hal-00558089 https://hal.archives-ouvertes.fr/hal-00558089 https://hal.archives-ouvertes.fr/hal-00558089/document https://hal.archives-ouvertes.fr/hal-00558089/file/PEER_stage2_10.1038%252Fejhg.2010.106.pdf doi:10.1038/ejhg.2010.106 info:eu-repo/semantics/OpenAccess ISSN: 1018-4813 EISSN: 1476-5438 European Journal of Human Genetics https://hal.archives-ouvertes.fr/hal-00558089 European Journal of Human Genetics, Nature Publishing Group, 2010, ⟨10.1038/ejhg.2010.106⟩ biobanks tissue banks dna banks sample collections sample repositories genetic databases public attitudes trust public surveys info:eu-repo/semantics/article Journal articles 2010 ftccsdartic https://doi.org/10.1038/ejhg.2010.106 2020-12-26T06:10:45Z International audience In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. Surveys on willingness to participate in research may not always predict actual participation rates, however. We compared hypothetical willingness as estimated in eleven surveys conducted in Sweden, Iceland, UK, Ireland, US, and Singapore to factual participation rates in twelve biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, twelve suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited. Article in Journal/Newspaper Iceland Archive ouverte HAL (Hyper Article en Ligne, CCSD - Centre pour la Communication Scientifique Directe) European Journal of Human Genetics 18 11 1261 1264 |
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Archive ouverte HAL (Hyper Article en Ligne, CCSD - Centre pour la Communication Scientifique Directe) |
op_collection_id |
ftccsdartic |
language |
English |
topic |
biobanks tissue banks dna banks sample collections sample repositories genetic databases public attitudes trust public surveys |
spellingShingle |
biobanks tissue banks dna banks sample collections sample repositories genetic databases public attitudes trust public surveys Johnsson, Linus Helgesson, Gert Rafnar, Thorunn Halldorsdottir, Ingibjorg Kee-Seng, Chia Eriksson, Stefan Hansson, Mats G. Hypothetical and factual willingness to participate in biobank research |
topic_facet |
biobanks tissue banks dna banks sample collections sample repositories genetic databases public attitudes trust public surveys |
description |
International audience In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. Surveys on willingness to participate in research may not always predict actual participation rates, however. We compared hypothetical willingness as estimated in eleven surveys conducted in Sweden, Iceland, UK, Ireland, US, and Singapore to factual participation rates in twelve biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, twelve suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited. |
author2 |
Uppsala University |
format |
Article in Journal/Newspaper |
author |
Johnsson, Linus Helgesson, Gert Rafnar, Thorunn Halldorsdottir, Ingibjorg Kee-Seng, Chia Eriksson, Stefan Hansson, Mats G. |
author_facet |
Johnsson, Linus Helgesson, Gert Rafnar, Thorunn Halldorsdottir, Ingibjorg Kee-Seng, Chia Eriksson, Stefan Hansson, Mats G. |
author_sort |
Johnsson, Linus |
title |
Hypothetical and factual willingness to participate in biobank research |
title_short |
Hypothetical and factual willingness to participate in biobank research |
title_full |
Hypothetical and factual willingness to participate in biobank research |
title_fullStr |
Hypothetical and factual willingness to participate in biobank research |
title_full_unstemmed |
Hypothetical and factual willingness to participate in biobank research |
title_sort |
hypothetical and factual willingness to participate in biobank research |
publisher |
HAL CCSD |
publishDate |
2010 |
url |
https://hal.archives-ouvertes.fr/hal-00558089 https://hal.archives-ouvertes.fr/hal-00558089/document https://hal.archives-ouvertes.fr/hal-00558089/file/PEER_stage2_10.1038%252Fejhg.2010.106.pdf https://doi.org/10.1038/ejhg.2010.106 |
genre |
Iceland |
genre_facet |
Iceland |
op_source |
ISSN: 1018-4813 EISSN: 1476-5438 European Journal of Human Genetics https://hal.archives-ouvertes.fr/hal-00558089 European Journal of Human Genetics, Nature Publishing Group, 2010, ⟨10.1038/ejhg.2010.106⟩ |
op_relation |
info:eu-repo/semantics/altIdentifier/doi/10.1038/ejhg.2010.106 hal-00558089 https://hal.archives-ouvertes.fr/hal-00558089 https://hal.archives-ouvertes.fr/hal-00558089/document https://hal.archives-ouvertes.fr/hal-00558089/file/PEER_stage2_10.1038%252Fejhg.2010.106.pdf doi:10.1038/ejhg.2010.106 |
op_rights |
info:eu-repo/semantics/OpenAccess |
op_doi |
https://doi.org/10.1038/ejhg.2010.106 |
container_title |
European Journal of Human Genetics |
container_volume |
18 |
container_issue |
11 |
container_start_page |
1261 |
op_container_end_page |
1264 |
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1766040110445363200 |