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dc.contributor.authorMählmann, Laura -
dc.contributor.authorSchee gen. Halfmann, Sebastian-
dc.contributor.authorvon Wyl, Agnes-
dc.contributor.authorBrand, Angela-
dc.date.accessioned2018-02-28T12:46:54Z-
dc.date.available2018-02-28T12:46:54Z-
dc.date.issued2018-
dc.identifier.issn1662-4246de_CH
dc.identifier.issn1662-8063de_CH
dc.identifier.urihttps://digitalcollection.zhaw.ch/handle/11475/3310-
dc.description.abstractObjective: To assess the willingness of older Swiss adults to share genetic data for research purposes and to investigate factors that might impact their willingness to share data. Methods: Semi-structured interviews were conducted among 40 participants (19 male and 21 female) aged between 67 and 92 years, between December 2013 and April 2014 attending the “Senioren Universität” Zürich, Switzerland. All interviews were audio-recorded, transcribed verbatim, and anonymized. For the analysis of the interviews, an initial coding scheme was developed, refined over time, and applied afterwards to all interviews. Results: The majority of participants were in favor of placing genetic data to research’s disposal. Participant’s motivations to share data were mainly driven by altruistic reasons and by contributing to the greater good. Furthermore, several factors which might impact the willingness to share data such as sharing data with private companies, generational differences, differences between sharing genetic data or health data, and sharing due to financial incentives were highlighted. Last, some participants indicated concerns regarding data sharing such as misuse of data, the fear of becoming a transparent citizen, and data safety. However, 20% of the participants express confidence in data protection. Even participants who were skeptical in the beginning of the interviews admitted the benefits of data sharing. Discussion: Overall, this study suggests older citizens are willing to share their data for research purposes. However, most of them will only contribute if their data is appropriately protected and if they trust the research institution to use the shared data responsibly. More transparency and detailed information regarding the data usage are urgently needed. There is a great need to increase the engagement of older adults in research since they present a large segment of our society – one which is often underexamined in research. Conclusion: Increased focus on general public engagement, especially of older adults, in scientific research activities known as “citizen science” is needed to further strengthen the uptake of personalized medicine.de_CH
dc.language.isoende_CH
dc.publisherKargerde_CH
dc.relation.ispartofPublic Health Genomicsde_CH
dc.rightsLicence according to publishing contractde_CH
dc.subjectAltruismde_CH
dc.subjectCitizen sciencede_CH
dc.subjectData protectionde_CH
dc.subjectData sharingde_CH
dc.subjectDirect-to-consumer personal genomicsde_CH
dc.subjectOlder adultde_CH
dc.subjectPersonalized medicinede_CH
dc.subjectPrivacyde_CH
dc.subjectResearch participationde_CH
dc.subject.ddc150: Psychologiede_CH
dc.subject.ddc302: Soziale Interaktionde_CH
dc.titleAttitudes towards personal genomics and sharing of genetic data among older Swiss adults : a qualitative studyde_CH
dc.typeBeitrag in wissenschaftlicher Zeitschriftde_CH
dcterms.typeTextde_CH
zhaw.departementAngewandte Psychologiede_CH
dc.identifier.doi10.1159/000486588de_CH
zhaw.funding.euNode_CH
zhaw.originated.zhawYesde_CH
zhaw.pages.end306de_CH
zhaw.pages.start293de_CH
zhaw.publication.statuspublishedVersionde_CH
zhaw.volume20de_CH
zhaw.publication.reviewPeer review (Publikation)de_CH
zhaw.webfeedAngewandte Gerontologiede_CH
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Mählmann, L., Schee gen. Halfmann, S., von Wyl, A., & Brand, A. (2018). Attitudes towards personal genomics and sharing of genetic data among older Swiss adults : a qualitative study. Public Health Genomics, 20, 293–306. https://doi.org/10.1159/000486588
Mählmann, L. et al. (2018) ‘Attitudes towards personal genomics and sharing of genetic data among older Swiss adults : a qualitative study’, Public Health Genomics, 20, pp. 293–306. Available at: https://doi.org/10.1159/000486588.
L. Mählmann, S. Schee gen. Halfmann, A. von Wyl, and A. Brand, “Attitudes towards personal genomics and sharing of genetic data among older Swiss adults : a qualitative study,” Public Health Genomics, vol. 20, pp. 293–306, 2018, doi: 10.1159/000486588.
MÄHLMANN, Laura , Sebastian SCHEE GEN. HALFMANN, Agnes VON WYL und Angela BRAND, 2018. Attitudes towards personal genomics and sharing of genetic data among older Swiss adults : a qualitative study. Public Health Genomics. 2018. Bd. 20, S. 293–306. DOI 10.1159/000486588
Mählmann, Laura , Sebastian Schee gen. Halfmann, Agnes von Wyl, and Angela Brand. 2018. “Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults : A Qualitative Study.” Public Health Genomics 20: 293–306. https://doi.org/10.1159/000486588.
Mählmann, Laura , et al. “Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults : A Qualitative Study.” Public Health Genomics, vol. 20, 2018, pp. 293–306, https://doi.org/10.1159/000486588.


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