ArticlePloS one2017
Open sharing of genomic data: Who does it and why?
Article in PloS one, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
30 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Pooled it
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Trial
- Perceptions of Multicancer Detection Tests Among Primary Care Physicians and Laypersons: A Qualitative Study.Cancer medicine · 2024Article
- FedGMMAT: Federated generalized linear mixed model association tests.PLoS computational biology · 2024Article
- Public attitudes towards genomic data sharing: results from a provincial online survey in Canada.BMC medical ethics · 2023Article
- Parents' Perspectives on Secondary Genetic Ancestry Findings in Pediatric Genomic Medicine.Clinical therapeutics · 2023Article
- Framing utility: Regulatory reform and genetic tests in the USA, 1989-2000.Social science & medicine (1982) · 2022Article
- Controlling my genome with my smartphone: first clinical experiences of the PROMISE system.Clinical research in cardiology : official journal of the German Cardiac Society · 2022Article
- Impacts of personal DNA ancestry testing.Journal of community genetics · 2021Article
- A survey of direct-to-consumer genotype data, and quality control tool (Computational and structural biotechnology journal · 2021Article
- Before and after enforcement of GDPR: Personal data protection requests received by Croatian Personal Data Protection Agency from academic and research institutions.Biochemia medica · 2020Article
- Just data? Solidarity and justice in data-driven medicine.Life sciences, society and policy · 2020Article
- Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- "Hunting Down My Son's Killer": New Roles of Patients in Treatment Discovery and Ethical Uncertainty.Journal of bioethical inquiry · 2020Article
- Enabling Posthumous Medical Data Donation: An Appeal for the Ethical Utilisation of Personal Health Data.Science and engineering ethics · 2019Article
- Article
- Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.American journal of human genetics · 2019Article
- Open Humans: A platform for participant-centered research and personal data exploration.GigaScience · 2019Review
- Direct-to-Consumer Genetic Testing Data Privacy: Key Concerns and Recommendations Based on Consumer Perspectives.Journal of personalized medicine · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.