Evidence map›Paper›PMID 22274578›Full record

ArticleEuropean journal of human genetics : EJHG2012

Legislation on direct-to-consumer genetic testing in seven European countries.

Pascal Borry, Rachel E van Hellemondt, Dominique Sprumont, Camilla Fittipaldi Duarte Jales, Emmanuelle Rial-Sebbag, Tade Matthias Spranger, Liam Curren, Jane Kaye, Herman Nys, Heidi Howard

Open access · bronzeAbstract read
In one paragraph

Article in European journal of human genetics : EJHG, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 46 papers.

0numbers the graph read from it
0cells of the map it votes in
46citing papers in PubMed
8.6field-weighted citation impact, top 2% of its field
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

46 citing papers in PubMed, 131 citations in OpenAlex.

  1. Harmonizing the genetic counselor profession in Europe.European journal of human genetics : EJHG · 2026
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  14. Distributed Ledger Technology in genomics: a call for Europe.European journal of human genetics : EJHG · 2020
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors at 8 institutions in 6 countries.

Pascal BorryCentre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium. Pascal.Borry@med.kuleuven.be
Rachel E van Hellemondt
Dominique Sprumont
Camilla Fittipaldi Duarte Jales
Emmanuelle Rial-Sebbag
Tade Matthias Spranger
Liam Curren
Jane Kaye
Herman Nys
Heidi Howard
KU Leuven · BELaboratoire Epidémiologie et Analyses en Santé Publique : Risques, Maladies Chroniques et Handicaps · FRLeiden University Medical Center · NLUniversity of Basel · CHUniversity of Bonn · DEUniversity of Neuchâtel · CHUniversity of Oxford · GBWellcome Centre for Ethics and Humanities · GB

Funding

Wellcome Trust 096599Wellcome Trust WT081407/Z/06/Z
6 · The paper itself

Abstract

An increasing number of private companies are now offering direct-to-consumer (DTC) genetic testing services. Although a lot of attention has been devoted to the regulatory framework of DTC genetic testing services in the USA, only limited information about the regulatory framework in Europe is available. We will report on the situation with regard to the national legislation on DTC genetic testing in seven European countries (Belgium, the Netherlands, Switzerland, Portugal, France, Germany, the United Kingdom). The paper will address whether these countries have legislation that specifically address the issue of DTC genetic testing or have relevant laws that is pertinent to the regulatory control of these services in their countries. The findings show that France, Germany, Portugal and Switzerland have specific legislation that defines that genetic tests can only be carried out by a medical doctor after the provision of sufficient information concerning the nature, meaning and consequences of the genetic test and after the consent of the person concerned. In the Netherlands, some DTC genetic tests could fall under legislation that provides the Minister the right to refuse to provide a license to operate if a test is scientifically unsound, not in accordance with the professional medical practice standards or if the expected benefit is not in balance with the (potential) health risks. Belgium and the United Kingdom allow the provision of DTC genetic tests.

Indexed as

AdvertisingCommunity ParticipationEuropeGenetic CounselingGenetic Predisposition to DiseaseGenetic TestingHealth PolicyHumansInformed ConsentRisk Factors

Identifiers

PMID22274578
PMCPMC3376265
OpenAlexW2111832460

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

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.