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Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey

This paper reports survey findings on the Swiss public’s willingness, attitudes, and concerns regarding personalized health research participation by providing health information and biological material. The survey reached a sample of 15,106 Swiss residents, from which we received 5,156 responses (3...

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Autores principales: Brall, Caroline, Berlin, Claudia, Zwahlen, Marcel, Ormond, Kelly E., Egger, Matthias, Vayena, Effy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8016315/
https://www.ncbi.nlm.nih.gov/pubmed/33793624
http://dx.doi.org/10.1371/journal.pone.0249141
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author Brall, Caroline
Berlin, Claudia
Zwahlen, Marcel
Ormond, Kelly E.
Egger, Matthias
Vayena, Effy
author_facet Brall, Caroline
Berlin, Claudia
Zwahlen, Marcel
Ormond, Kelly E.
Egger, Matthias
Vayena, Effy
author_sort Brall, Caroline
collection PubMed
description This paper reports survey findings on the Swiss public’s willingness, attitudes, and concerns regarding personalized health research participation by providing health information and biological material. The survey reached a sample of 15,106 Swiss residents, from which we received 5,156 responses (34.1% response rate). The majority of respondents were aware of research using human biological samples (71.0%) and held a positive opinion towards this type of research (62.4%). Of all respondents, 53.6% indicated that they would be willing to participate in a personalized health research project. Willingness to participate was higher in younger, higher educated, non-religious respondents with a background in the health sector. Respondents were more willing to provide ‘traditional’ types of health data, such as health questionnaires, blood or biological samples, as opposed to social media or app-related data. All respondents valued the return of individual research results, including risk for diseases for which no treatment is available. Our findings highlight that alongside general positive attitudes towards personalized health research using data and samples, respondents have concerns about data privacy and re-use. Concerns included potential discrimination, confidentiality breaches, and misuse of data for commercial or marketing purposes. The findings of this large-scale survey can inform Swiss research institutions and assist policymakers with adjusting practices and developing policies to better meet the needs and preferences of the public. Efforts in this direction could focus on research initiatives engaging in transparent communication, education, and engagement activities, to increase public understanding and insight into data sharing activities, and ultimately strengthen personalized health research efforts.
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spelling pubmed-80163152021-04-08 Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey Brall, Caroline Berlin, Claudia Zwahlen, Marcel Ormond, Kelly E. Egger, Matthias Vayena, Effy PLoS One Research Article This paper reports survey findings on the Swiss public’s willingness, attitudes, and concerns regarding personalized health research participation by providing health information and biological material. The survey reached a sample of 15,106 Swiss residents, from which we received 5,156 responses (34.1% response rate). The majority of respondents were aware of research using human biological samples (71.0%) and held a positive opinion towards this type of research (62.4%). Of all respondents, 53.6% indicated that they would be willing to participate in a personalized health research project. Willingness to participate was higher in younger, higher educated, non-religious respondents with a background in the health sector. Respondents were more willing to provide ‘traditional’ types of health data, such as health questionnaires, blood or biological samples, as opposed to social media or app-related data. All respondents valued the return of individual research results, including risk for diseases for which no treatment is available. Our findings highlight that alongside general positive attitudes towards personalized health research using data and samples, respondents have concerns about data privacy and re-use. Concerns included potential discrimination, confidentiality breaches, and misuse of data for commercial or marketing purposes. The findings of this large-scale survey can inform Swiss research institutions and assist policymakers with adjusting practices and developing policies to better meet the needs and preferences of the public. Efforts in this direction could focus on research initiatives engaging in transparent communication, education, and engagement activities, to increase public understanding and insight into data sharing activities, and ultimately strengthen personalized health research efforts. Public Library of Science 2021-04-01 /pmc/articles/PMC8016315/ /pubmed/33793624 http://dx.doi.org/10.1371/journal.pone.0249141 Text en © 2021 Brall et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Brall, Caroline
Berlin, Claudia
Zwahlen, Marcel
Ormond, Kelly E.
Egger, Matthias
Vayena, Effy
Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey
title Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey
title_full Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey
title_fullStr Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey
title_full_unstemmed Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey
title_short Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey
title_sort public willingness to participate in personalized health research and biobanking: a large-scale swiss survey
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8016315/
https://www.ncbi.nlm.nih.gov/pubmed/33793624
http://dx.doi.org/10.1371/journal.pone.0249141
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