ArticleJournal of community genetics2012
Genetic testing legislation in Western Europe-a fluctuating regulatory target.
Article in Journal of community genetics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers.
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.
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Who cites it
23 citing papers in PubMed.
- Communicating BRCA research results to patients enrolled in international clinical trials: lessons learnt from the AGO-OVAR 16 study.BMC medical ethics · 2016Trial
- Personalized health predictions challenge existing insurance frameworks: Time to revisit life and disability insurance regulation?Journal of genetic counseling · 2026Article
- Does genetic testing impact stigma in autism: A scoping review.Journal of community genetics · 2026Review
- Predicting age of onset and progression of disease in late-onset genetic neurodegenerative diseases: An ethics review and research agenda.European journal of human genetics : EJHG · 2024Review
- Clinician perspectives on policy approaches to genetic risk disclosure in families.Familial cancer · 2024Article
- Legal aspects of genetic testing in the evaluation of ventricular tachycardias.Herzschrittmachertherapie & Elektrophysiologie · 2023Review
- Donor Safety, Discrepancies Between Practice and Theory: Analysis of the Polish Supreme Audit Office's Report.The application of clinical genetics · 2023Article
- Voluntary workplace genomic testing: wellness benefit or Pandora's box?NPJ genomic medicine · 2022Review
- How the "control-fate continuum" helps explain the genetic testing decision-making process: a grounded theory study.European journal of human genetics : EJHG · 2020Article
- German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192).Frontiers in genetics · 2020Article
- Return of individual genomic research results: are laws and policies keeping step?European journal of human genetics : EJHG · 2019Article
- Preventing discrimination based on psychiatric risk biomarkers.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2019Review
- Direct to consumer genetic testing-law and policy concerns in Ireland.Irish journal of medical science · 2018Article
- Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape.Journal of community genetics · 2018Article
- A FAIR guide for data providers to maximise sharing of human genomic data.PLoS computational biology · 2018Article
- Opportunities and Challenges for Genetic Studies of End-Stage Renal Disease in Canada.Canadian journal of kidney health and disease · 2018Review
- Parents' Attitudes toward Clinical Genetic Testing for Autism Spectrum Disorder-Data from a Norwegian Sample.International journal of molecular sciences · 2017Article
- Clinicians' attitude towards family planning and timing of diagnosis in autosomal dominant polycystic kidney disease.PloS one · 2017Article
- Different concepts and models of information for family-relevant genetic findings: comparison and ethical analysis.Medicine, health care, and philosophy · 2015Article
- Disclosure of research results in genetic studies of Parkinson's disease caused by LRRK2 mutations.Movement disorders : official journal of the Movement Disorder Society · 2015Article
Corrections and comments
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Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Rapid developments of biomedical science have initiated different fora to take stand on the protection of human rights and human dignity. In front of the new genomic era with the completion of the Human Genome Project in 2003, a plethora of instruments addressing human genetic testing emerged, some looking suspiciously like legal acts. The notion of genetic exceptionalism was characteristic to the normative reactions in the legal acts, but it can be questioned how justified this is. Despite the critique on genetic exceptionalism, it is argued that in certain situations detection of a serious genetic anomaly may cause extra anxiety in a person tested, if the knowledge has a great significance also to family members. Regulative needs should depend on the context and purpose of the test. This review examines the legal framework governing the use of genetic tests in the clinical setting in Western Europe. Five countries have enacted genetic specific laws, and three have comprehensive provisions pertaining genetic testing in their biomedical legislation. Central provisions cover informed consent, autonomy and integrity of the person tested, further uses of tests results, quality requirements of the personnel and facilities involved. Moreover, contemporary challenges related to whole genome sequencing, direct-to-consumer genetic tests and insurance are briefly discussed.
Identifiers
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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.