ArticleLife sciences, society and policy2017
Ethical sharing of health data in online platforms - which values should be considered?
Article in Life sciences, society and policy, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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.
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Who cites it
14 citing papers in PubMed.
- An examination of data management in digital health processes from a societal perspective.BMC health services research · 2025Article
- Application of an Innovative Methodology to Build Infrastructure for Digital Transformation of Health Systems: Developmental Program Evaluation.JMIR formative research · 2025Article
- Ethical Dimensions of Clinical Data Sharing by U.S. Health Care Organizations for Purposes beyond Direct Patient Care: Interviews with Health Care Leaders.Applied clinical informatics · 2025Article
- Privacy-preserving federated data access and federated learning: Improved data sharing and AI model development in transfusion medicine.Transfusion · 2025Review
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Ethical issues in big data: A qualitative study comparing responses in the health and higher education sectors.PloS one · 2023Article
- Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.Frontiers in public health · 2022Article
- How should we think about clinical data ownership?Journal of medical ethics · 2020Article
- Valuable Genomes: Taxonomy and Archetypes of Business Models in Direct-to-Consumer Genetic Testing.Journal of medical Internet research · 2020Article
- Enabling Posthumous Medical Data Donation: An Appeal for the Ethical Utilisation of Personal Health Data.Science and engineering ethics · 2019Article
- The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data.International journal of population data science · 2019Article
- Kenyan health stakeholder views on individual consent, general notification and governance processes for the re-use of hospital inpatient data to support learning on healthcare systems.BMC medical ethics · 2019Article
- GRANULAR PATIENT CONTROL OF PERSONAL HEALTH INFORMATION: FEDERAL AND STATE LAW CONSIDERATIONS.Jurimetrics · 2018Article
- Big Data and Digital Solutions: Laying the Foundation for Cardiovascular Population ManagementMethodist DeBakey cardiovascular journalReview
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes.With this in mind, the Science and Values Working Group of the COST Action CHIP ME 'Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives' (IS 1303) identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals' trust in research.We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment.
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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.