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Open sharing of genomic data: Who does it and why?
- Source :
- PLoS ONE, PLoS ONE, Vol 12, Iss 5, p e0177158 (2017), PLoS ONE, 12 (5)
- Publication Year :
- 2017
- Publisher :
- ETH Zurich, 2017.
-
Abstract
- 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.<br />PLoS ONE, 12 (5)<br />ISSN:1932-6203
- Subjects :
- 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)
Subjects
Details
- Language :
- English
- ISSN :
- 19326203
- Database :
- OpenAIRE
- Journal :
- PLoS ONE, PLoS ONE, Vol 12, Iss 5, p e0177158 (2017), PLoS ONE, 12 (5)
- Accession number :
- edsair.doi.dedup.....dfbd51a7681aa75dc72acb988cf08151
- Full Text :
- https://doi.org/10.3929/ethz-b-000220265