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Use this url to cite publication: https://cris.mruni.eu/cris/handle/007/24335

Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape

Type of publication
Straipsnis Web of Science ir Scopus duomenų bazėje / Article in Web of Science and Scopus database (S1)
Author(s)
Kalokairinou, Louiza
Catholic University Leuven
Howard, Heidi Carmen
Uppsala university
Slokenberga, Santa
Uppsala university
Fisher, E.
Robert Koch Institute
Flatscher-Thöni, Magdalena
UMIT Univ Hlth Sci Med Informat & Technol
Hartlev, Mette
University of Copenhagen
Van Hellemondt, Rachèl E.
Leiden University Medical Centre
Juškevičius, Jonas
Viešosios teisės institutas / Institute of Public Law
Kapelenska-Pregowska, J.
Nicolaus Copernicus university
Kováč, P.
Forens Sk Inst Forenznych Med Skych Expertiz Sro
Trnava University
Lovrečić, Luca
University Medical Centre Ljubljana
Nys, Herman F.L.
Catholic University Leuven
De Paor, Aisling
Dublin City University
Phillips, Andelka M.
University of Dublin
Prudil, L.
AK PRUDIL Spol
Rial-Sebbag, Emmanuelle
Institut national de la santé et de la recherche médicale
Romeo-Casabona, Carlos María
The University of the Basque Country
Sándor, Judit
Central European University
Schuster, A.
University of Trento
Soini, Sirpa
Helsinki University Central Hospital
Søvig, Karl Harald
University of Bergen
Stoffel, D.
University Paris-Est Créteil
Titma, Tiina
Tallinn University
Tallinn University of Technology
Trokanas, T.
European University of Cyprus
Borry, Pascal
University of Leuven
Title
Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape
Publisher (trusted)
Springer Verlag
Date Issued
Date Issued
2018
Extent
p. 117-132
Is part of
Journal of community genetics. [Heidelberg] : Springer Verlag, 2018, vol. 9, iss. 2.
Field of Science

Teisė / Law (S001)

Visuomenės sveikata /...

Keywords

direct-to-consumer ge...

regulation

in vitro diagnostic m...

medical supervision

genetic counselling

informed consent

Abstract

Despite the increasing availability of direct-to-c onsumer (DTC)genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, the Netherlands and the United Kingdom. Emphasis is placed on provisions relating to medical supervision, genetic counselling and informed consent. Our results indicate that currently there is a wide spectrum of laws regarding genetic testing in Europe. There are countries (e.g. France and Germany) which essentially ban DTC genetic testing, while in others (e.g. Luxembourg and Poland) DTC genetic testing may only be restricted by general laws, usually regarding health care services and patients' rights.

Is Referenced by
SpringerLink
Scopus
Emerging Sources Citation Index (Web of Science)
Type of document
type::text::journal::journal article::research article
ISSN (of the container)
1868-310X
1868-6001
DOI
WOS
000427515200002
SCOPUS
2-s2.0-85044216182
eLABa
27147723
Coverage Spatial
Vokietija / Germany (DE)
Language
Anglų / English (en)
URI
URI
https://doi.org/10.1007/s12687-017-0344-2
Bibliographic Details
80
Affiliation(s)
Viešosios teisės institutas / Institute of Public Law
Teisės mokykla / Law School
Mykolo Romerio universitetas / Mykolas Romeris University
Project(s)
European Cooperation in Science and Technology