ReviewHuman genetics2018
Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
Review in Human genetics, 2018. 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, 43 citations in OpenAlex.
- Artificial intelligence for genomic science: a scoping review of concepts, architectures, applications, and open challenges.Frontiers in bioinformatics · 2026Pooled it
- Management discussion of laws and regulations on human genetic resources in China: a scoping review.BMC medical ethics · 2026Article
- Anonymization, accountability, and access: legal dimensions of health data sharing in federated networks. Perspectives from empirical study.Frontiers in digital health · 2026Article
- From Biobank to "Bio-Think-Tank": Functional Evolution of UK Biobank in Public Health Policy Making.Public health reviews · 2026Review
- A scoping review of human genetic resources management policies and databases in high- and middle-low-income countries.BMC medical ethics · 2025Article
- Record linkage as a vital key player for the COVID-19 syndemic - The call for legal harmonization to overcome research challenges.International journal of population data science · 2023Article
- Bridging the European Data Sharing Divide in Genomic Science.Journal of medical Internet research · 2022Article
- Data sharing across osteoarthritis research groups and disciplines: Opportunities and challenges.Osteoarthritis and cartilage open · 2022Article
- International data governance for neuroscience.Neuron · 2022Review
- Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach.Frontiers in digital health · 2022Review
- Artificial Intelligence in Biomedicine: A Legal Insight.Biotech (Basel (Switzerland)) · 2021Article
- Data Sharing Under the General Data Protection Regulation: Time to Harmonize Law and Research Ethics?Hypertension (Dallas, Tex. : 1979) · 2021Review
- Record linkage of population-based cohort data from minors with national register data: a scoping review and comparative legal analysis of four European countries.Open research Europe · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Combining Partially Overlapping Multi-Omics Data in Databases Using Relationship Matrices.Frontiers in plant science · 2020Article
- Legacy samples in Finnish biobanks: social and legal issues related to the transfer of old sample collections into biobanks.Human genetics · 2019Article
- DAISY: A Data Information System for accountability under the General Data Protection Regulation.GigaScience · 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
1 author at 1 institution in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
There are clear benefits from genomics and health data sharing in research and in therapy for individuals across societies. At the same time, citizens have different expectations and fears about that data sharing. International legislation in relation with research ethics and practice and, particularly, data protection create a particular environment that, as is seen in the articles in part two of this special issue, are crying out for harmonisation both at a procedural but at fundamental conceptual levels. The law of data sharing is pulling in different directions. This paper poses the question, 'harmonisation, an impossible dream?' and the answer is a qualified 'no'. The paper reflects on what can be seen in the papers in part two of the special issue. It then identifies three major areas of conceptual uncertainty in the new EU General Data Protection Regulation (not because it has superiority over other jurisdictions, but because it is a recent revision of data protection law that leaves universal conceptual questions unclear). Thereafter, the potential for Artificial Intelligence to meet some of the shortcomings is discussed. The paper ends with a consideration of the conditions under which data sharing harmonisation might be achieved: an understanding of a human rights approach and citizen sensitivities in considering the 'public interest'; social liberalism as a basis of solidarity; and the profession of 'researcher'.
Indexed as
Identifiers
What 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.