Which attributes of whole genome sequencing tests are most important to the general population? Results from a German preference study

Show simple item record

dc.identifier.uri http://dx.doi.org/10.15488/3202
dc.identifier.uri http://www.repo.uni-hannover.de/handle/123456789/3232
dc.contributor.author Plöthner, Marika
dc.contributor.author Schmidt, Katharina
dc.contributor.author Schips, Clarissa
dc.contributor.author Damm, Kathrin
dc.date.accessioned 2018-04-27T12:18:22Z
dc.date.available 2018-04-27T12:18:22Z
dc.date.issued 2018
dc.identifier.citation Plöthner, M.; Schmidt, K.; Schips, C.; Damm, K.: Which attributes of whole genome sequencing tests are most important to the general population? Results from a German preference study. In: Pharmacogenomics and Personalized Medicine 11 (2018), S. 7-21. DOI: https://doi.org/10.2147/PGPM.S149803
dc.description.abstract Objective: The aim of this study was to identify the preferences for whole genome sequencing (WGS) tests without genetic counseling. Methods: A discrete choice experiment was conducted where participants chose between two hypothetical alternatives consisting of the following attributes: test accuracy, test costs, identified diseases, probability of disease occurrence, and data access. People from the general German population aged ≥18 years were eligible to participate in the survey. We estimated generalized linear mixed effects models, latent class mixed-logit models, and the marginal willingness to pay. Results: Three hundred and one participants were included in the final analysis. Overall, the most favored WGS testing attributes were 95% test accuracy, report of severe hereditary diseases and 40% probability of disease development, test costs of €1,000, and access to test results for researchers. Subgroup analysis, however, showed differences in these preferences between males and females. For example, males preferred reporting of results at a 10% probability of disease development and females preferred reporting of results at a 40% probability. The test cost, participant’s educational level, and access to data influenced the willingness to participate in WGS testing in reality. Conclusion: The German general population was aware of the importance of genetic research and preferred to provide their own genetic data for researchers. However, among others, the reporting of results with a comparatively relatively low probability of disease development at a level of 40%, and the test accuracy of 95% had a high preference. This shows that the results and consequences of WGS testing without genetic counseling are hard to assess for individuals. Therefore, WGS testing should be supported by qualified genetic counseling, where the attributes and consequences are explained. © 2018 Plöthner et al. eng
dc.language.iso eng
dc.publisher Macclesfield : Dove Medical Press
dc.relation.ispartofseries Pharmacogenomics and Personalized Medicine 11 (2018)
dc.rights CC BY-NC 3.0
dc.rights.uri https://creativecommons.org/licenses/by-nc/3.0/
dc.subject Discrete choice experiment eng
dc.subject Genetic testing eng
dc.subject Latent class model eng
dc.subject Preferences eng
dc.subject Whole genome sequencing eng
dc.subject Willingness to pay eng
dc.subject.ddc 610 | Medizin, Gesundheit ger
dc.title Which attributes of whole genome sequencing tests are most important to the general population? Results from a German preference study
dc.type article
dc.type Text
dc.relation.issn 1178-7066
dc.relation.doi https://doi.org/10.2147/PGPM.S149803
dc.bibliographicCitation.volume 11
dc.bibliographicCitation.firstPage 7
dc.bibliographicCitation.lastPage 21
dc.description.version publishedVersion
tib.accessRights frei zug�nglich


Files in this item

This item appears in the following Collection(s):

Show simple item record

 

Search the repository


Browse

My Account

Usage Statistics