ArticleJournal of bioethical inquiry2017
Big Data and Health Research-The Governance Challenges in a Mixed Data Economy.
Article in Journal of bioethical inquiry, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
17 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Specific measures for data-intensive health research without consent: a systematic review of soft law instruments and academic literature.European journal of human genetics : EJHG · 2024Pooled it
- Linkage of the CHHiP randomised controlled trial with primary care data: a study investigating ways of supplementing cancer trials and improving evidence-based practice.BMC medical research methodology · 2020Trial
- A scoping review of ethical aspects of public-private partnerships in digital health.NPJ digital medicine · 2025Article
- Accessible Ecosystem for Clinical Research (Federated Learning for Everyone): Development and Usability Study.JMIR formative research · 2024Article
- An ethical code for collecting, using and transferring sensitive health data: outcomes of a modified Policy Delphi process in Singapore.BMC medical ethics · 2023Article
- A solidarity paradox - welfare state data in global health data economy.Health (London, England : 1997) · 2023Article
- Overcoming ethical and legal obstacles to data linkage in health research: stakeholder perspectives.International journal of population data science · 2023Article
- The life and death of confidentiality: a historical analysis of the flows of patient information.BioSocieties · 2023Article
- Data authority: Public debate about personalized medicine in Denmark.Public understanding of science (Bristol, England) · 2022Article
- [Linkage of claims data with data from epidemiological cancer registries: possibilities and limitations in the German federal states].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2022Article
- Mothering a population: How Danish mothers experience newborn dried blood spot samples and their considerations about re-use of samples for research purposes.European journal of midwifery · 2022Article
- The Indiana Learning Health System Initiative: Early experience developing a collaborative, regional learning health system.Learning health systems · 2021Article
- Ethics review of big data research: What should stay and what should be reformed?BMC medical ethics · 2021Review
- Big Data, Biomedical Research, and Ethics Review: New Challenges for IRBs.Ethics & human research · 2020Article
- Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada.International journal of population data science · 2019Article
- Data integration of electronic medical record under administrative decentralization of medical insurance and healthcare in China: a case study.Israel journal of health policy research · 2019Article
- Ethics and Epistemology of Big Data.Journal of bioethical inquiry · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Denmark is a society that has already moved towards Big Data and a Learning Health Care System. Data from routine healthcare has been registered centrally for years, there is a nationwide tissue bank, and there are numerous other available registries about education, employment, housing, pollution, etcetera. This has allowed Danish researchers to study the link between exposures, genetics and diseases in a large population. This use of public registries for scientific research has been relatively uncontroversial and has been supported by facilitative regulation that allows data to be used without the consent of data subjects. However, in the future much of the data will not be held by public authorities but by private companies. What are the implications of this shift for the governance of the research use of the data? This paper will argue that increased involvement of Research Ethics Committees and better training of researchers are necessary; and that some form of consent will have to be re-introduced. Four different consent models will be discussed: Opt-Out, Broad/Blanket consent, Dynamic consent, and Meta consent. It will be argued that a governance model including a possibility for citizens to make meta-choices strikes the best balance between individual and public interests.
Indexed as
Identifiers
28980135What OpenQuestion holds
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.