Open sharing of genomic data: Who does it and why?
| Autor: | Effy Vayena, Alessandro Blasimme, Tobias Haeusermann, Darja Irdam, Bastian Greshake, Martin Richards |
|---|---|
| Přispěvatelé: | Wang, Kai, Haeusermann, Tobias [0000-0002-5880-7873], Apollo - University of Cambridge Repository |
| Jazyk: | angličtina |
| Rok vydání: | 2017 |
| Předmět: |
0301 basic medicine
Male Distribution (economics) lcsh:Medicine Social Sciences 030105 genetics & heredity Bioinformatics Database and Informatics Methods Families Sociology Information system Medicine and Health Sciences lcsh:Science Children media_common Multidisciplinary Schools Conceptualization medicine.diagnostic_test Genomics Medical research Genomic Databases Open data Female Research Article media_common.quotation_subject Internet privacy Research and Analysis Methods Education 03 medical and health sciences Genomic Medicine ddc:570 Direct-To-Consumer Screening and Testing medicine Genetics Humans Genetic Testing Genetic testing Clinical Genetics Information Services business.industry lcsh:R Biology and Life Sciences Computational Biology Human Genetics Genome Analysis Data sharing 030104 developmental biology Biological Databases Age Groups People and Places lcsh:Q Population Groupings business Diversity (politics) |
| Zdroj: | PLoS ONE PLoS ONE, Vol 12, Iss 5, p e0177158 (2017) PLoS ONE, 12 (5) |
| ISSN: | 1932-6203 |
| DOI: | 10.3929/ethz-b-000220265 |
| Popis: | We explored the characteristics and motivations of people who, having obtained their genetic or genomic data from Direct-To-Consumer genetic testing (DTC-GT) companies, voluntarily decide to share them on the publicly accessible web platform openSNP. The study is the first attempt to describe open data sharing activities undertaken by individuals without institutional oversight. In the paper we provide a detailed overview of the distribution of the demographic characteristics and motivations of people engaged in genetic or genomic open data sharing. The geographical distribution of the respondents showed the USA as dominant. There was no significant gender divide, the age distribution was broad, educational background varied and respondents with and without children were equally represented. Health, even though prominent, was not the respondents' primary or only motivation to be tested. As to their motivations to openly share their data, 86.05% indicated wanting to learn about themselves as relevant, followed by contributing to the advancement of medical research (80.30%), improving the predictability of genetic testing (76.02%) and considering it fun to explore genotype and phenotype data (75.51%). Whereas most respondents were well aware of the privacy risks of their involvement in open genetic data sharing and considered the possibility of direct, personal repercussions troubling, they estimated the risk of this happening to be negligible. Our findings highlight the diversity of DTC-GT consumers who decide to openly share their data. Instead of focusing exclusively on health-related aspects of genetic testing and data sharing, our study emphasizes the importance of taking into account benefits and risks that stretch beyond the health spectrum. Our results thus lend further support to the call for a broader and multi-faceted conceptualization of genomic utility. PLoS ONE, 12 (5) ISSN:1932-6203 |
| Databáze: | OpenAIRE |
| Externí odkaz: |
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