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

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cris.virtual.author-orcid0000-0003-3505-348X
cris.virtual.author-orcid0000-0002-6772-6346
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cris.virtual.author-orcid0000-0001-7462-5132
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cris.virtualsource.author-orcidd240f0ab-112b-444f-a9ff-e132d3e7d474
cris.virtualsource.author-orcid3360179c-9be9-473b-ac03-a22eb128643e
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dc.contributor.authorBrall, Caroline
dc.contributor.authorBerlin, Claudia
dc.contributor.authorZwahlen, Marcel
dc.contributor.authorOrmond, Kelly E
dc.contributor.authorEgger, Matthias
dc.contributor.authorVayena, Effy
dc.date.accessioned2024-09-02T17:25:28Z
dc.date.available2024-09-02T17:25:28Z
dc.date.issued2021-04-01
dc.description.abstractThis 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.
dc.description.numberOfPages17
dc.description.sponsorshipInstitut für Sozial- und Präventivmedizin (ISPM)
dc.identifier.doi10.48350/155655
dc.identifier.pmid33793624
dc.identifier.publisherDOI10.1371/journal.pone.0249141
dc.identifier.urihttps://boris-portal.unibe.ch/handle/20.500.12422/41805
dc.language.isoen
dc.publisherPublic Library of Science
dc.relation.ispartofPLoS ONE
dc.relation.issn1932-6203
dc.relation.organizationDCD5A442BECFE17DE0405C82790C4DE2
dc.subject.ddc600 - Technology::610 - Medicine & health
dc.subject.ddc300 - Social sciences, sociology & anthropology::360 - Social problems & social services
dc.titlePublic willingness to participate in personalized health research and biobanking: A large-scale Swiss survey.
dc.typearticle
dspace.entity.typePublication
oaire.citation.issue4
oaire.citation.startPagee0249141
oaire.citation.volume16
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oairecerif.author.affiliationInstitut für Sozial- und Präventivmedizin (ISPM)
oairecerif.author.affiliationInstitut für Sozial- und Präventivmedizin (ISPM)
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oairecerif.author.affiliationInstitut für Sozial- und Präventivmedizin (ISPM)
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unibe.date.licenseChanged2021-04-09 11:32:28
unibe.description.ispublishedpub
unibe.eprints.legacyId155655
unibe.journal.abbrevTitlePLOS ONE
unibe.refereedTRUE
unibe.subtype.articlejournal

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