ReviewEuropean journal of human genetics : EJHG2018
Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation.
Review in European journal of human genetics : EJHG, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 61 papers, 2 of them syntheses 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
61 citing papers in PubMed, 2 syntheses or guidelines 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
- Factors influencing harmonized health data collection, sharing and linkage in Denmark and Switzerland: A systematic review.PloS one · 2019Pooled it
- Patient views on research use of clinical data without consent: Legal, but also acceptable?European journal of human genetics : EJHG · 2019Trial
- Artificial Intelligence in Pediatric Cardiovascular Genetics: From Multimodal Diagnosis to Risk Prediction and Precision Therapeutics.International journal of molecular sciences · 2026Review
- Public and patient involvement in developing a survey on re-consent for pediatric genomic data sharing in Japan: a GRIPP2-LF report.Journal of community genetics · 2026Article
- Pediatric Clinical Images Without Consent: A Governance Gap in the Long-Term Reuse of Health Data in Digital Health Ecosystems.Journal of medical Internet research · 2026Article
- Fully Anonymized Digital Health Data Acquisition in a Research Partnership Using a Blinded Deidentification Proxy in the HerzFit App: Implementation Study.JMIR formative research · 2026Article
- Implementing palliative reasoning in multiprofessional palliative care: A participatory action research in the Netherlands.PloS one · 2026Article
- Federated, governed, and interoperable? The emerging architecture of public human genomic data infrastructures: a European perspective.Frontiers in genetics · 2026Review
- Challenges and Opportunities for Statistics in Omics Data Analysis.Advances in experimental medicine and biology · 2026Review
- Advancing Germline Genetic Testing for Breast Cancer in Resource-Restricted Settings: Evidence, Barriers, and a Practical Roadmap for Implementation.Breast cancer (Dove Medical Press) · 2026Review
- Qualitative study on ethics in paediatric Systemic Inflammatory Response Syndrome (SIRS) research: perspectives of Turkish legal guardians.BMC medical ethics · 2025Article
- Re-consent practices in biobanks in Japan: current status and stakeholder perspectives.Journal of community genetics · 2025Article
- Ethical and regulatory requirements for conducting researcher-driven large-scale multinational genetic haematological studies: the INHERENT experience.Health research policy and systems · 2025Article
- Deriving risk-adapted starting ages of breast cancer screening according to polygenic risk score.JNCI cancer spectrum · 2025Article
- Attention to the Values, Wishes and Needs of Patients With Advanced Cancer by Hospital Clinicians, an Exploratory Qualitative Study.The American journal of hospice & palliative care · 2025Article
- Being Seen as a Unique Person is Essential in Palliative Care at Home and Nursing Homes: A Qualitative Study With Patients and Relatives.The American journal of hospice & palliative care · 2025Article
- Article
- Understanding Genetic Screening: Harnessing Health Information to Prevent Disease Risks.International journal of medical sciences · 2025Review
- Mendelian Randomization Studies in Atherosclerotic Cardiovascular Diseases.Journal of lipid and atherosclerosis · 2024Review
1 more citing papers are in PubMed but not listed here.
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
Genetic data contain sensitive health and non-health-related information about the individuals and their family members. Therefore, adopting adequate privacy safeguards is paramount when processing genetic data for research or clinical purposes. One of the major legal instruments for personal data protection in the EU is the new General Data Protection Regulation (GDPR), which has entered into force in May 2016 and repealed the Directive 95/46/EC, with an ultimate goal of enhancing effectiveness and harmonization of personal data protection in the EU. This paper explores the major provisions of the new Regulation with regard to processing genetic data, and assesses the influence of such provisions on reinforcing the legal safeguards when sharing genetic data for research purposes. The new Regulation attempts to elucidate the scope of personal data, by recognizing pseudonymized data as personal (identifiable) data, and including genetic data in the catalog of special categories of data (sensitive data). Moreover, a set of new rules is laid out in the Regulation for processing personal data under the scientific research exemption. For instance, further use of genetic data for scientific research purposes, without obtaining additional consent will be allowed, if the specific conditions is met. The new Regulation has already fueled concerns among various stakeholders, owing to the challenges that may emerge when implementing the Regulation across the countries. Notably, the provided definition for pseudonymized data has been criticized because it leaves too much room for interpretations, and it might undermine the harmonization of the data protection across the countries.
Indexed as
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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.