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German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192)
Genetic information is increasingly provided outside of the traditional clinical setting, allowing users to access it directly via specialized online platforms. This development is possibly resulting in changing ethical and social challenges for users of predictive genetic tests. Little is known abo...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Frontiers Media S.A.
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7099127/ https://www.ncbi.nlm.nih.gov/pubmed/32265977 http://dx.doi.org/10.3389/fgene.2020.00102 |
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author | Wöhlke, Sabine Schaper, Manuel Oliveri, Serena Cutica, Ilaria Spinella, Francesca Pravettoni, Gabriella Steinberger, Daniela Schicktanz, Silke |
author_facet | Wöhlke, Sabine Schaper, Manuel Oliveri, Serena Cutica, Ilaria Spinella, Francesca Pravettoni, Gabriella Steinberger, Daniela Schicktanz, Silke |
author_sort | Wöhlke, Sabine |
collection | PubMed |
description | Genetic information is increasingly provided outside of the traditional clinical setting, allowing users to access it directly via specialized online platforms. This development is possibly resulting in changing ethical and social challenges for users of predictive genetic tests. Little is known about the attitudes and experiences of users of web-accessed genetic information. This survey analyzes data from two European countries with regard to the utility of genetic information, the users’ ways of making use of and dealing with information, and their sharing behavior. Particular focus is given to ethical and social questions regarding the motivation to share personal genetic results with others. Social factors tested for are national background, gender, and marital, parental, and educational status. This study will contribute to public discourse and offer ethical recommendations. The study will also serve to validate the developed questionnaire for use in population representative surveys. |
format | Online Article Text |
id | pubmed-7099127 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | Frontiers Media S.A. |
record_format | MEDLINE/PubMed |
spelling | pubmed-70991272020-04-07 German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192) Wöhlke, Sabine Schaper, Manuel Oliveri, Serena Cutica, Ilaria Spinella, Francesca Pravettoni, Gabriella Steinberger, Daniela Schicktanz, Silke Front Genet Genetics Genetic information is increasingly provided outside of the traditional clinical setting, allowing users to access it directly via specialized online platforms. This development is possibly resulting in changing ethical and social challenges for users of predictive genetic tests. Little is known about the attitudes and experiences of users of web-accessed genetic information. This survey analyzes data from two European countries with regard to the utility of genetic information, the users’ ways of making use of and dealing with information, and their sharing behavior. Particular focus is given to ethical and social questions regarding the motivation to share personal genetic results with others. Social factors tested for are national background, gender, and marital, parental, and educational status. This study will contribute to public discourse and offer ethical recommendations. The study will also serve to validate the developed questionnaire for use in population representative surveys. Frontiers Media S.A. 2020-03-18 /pmc/articles/PMC7099127/ /pubmed/32265977 http://dx.doi.org/10.3389/fgene.2020.00102 Text en Copyright © 2020 Wöhlke, Schaper, Oliveri, Cutica, Spinella, Pravettoni, Steinberger and Schicktanz http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms. |
spellingShingle | Genetics Wöhlke, Sabine Schaper, Manuel Oliveri, Serena Cutica, Ilaria Spinella, Francesca Pravettoni, Gabriella Steinberger, Daniela Schicktanz, Silke German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192) |
title | German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192) |
title_full | German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192) |
title_fullStr | German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192) |
title_full_unstemmed | German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192) |
title_short | German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192) |
title_sort | german and italian users of web-accessed genetic data: attitudes on personal utility and personal sharing preferences. results of a comparative survey (n=192) |
topic | Genetics |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7099127/ https://www.ncbi.nlm.nih.gov/pubmed/32265977 http://dx.doi.org/10.3389/fgene.2020.00102 |
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