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Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape
Title / Series / Name
Journal of Community Genetics
Publication Volume
9
Publication Issue
2
Pages
Authors
Kalokairinou, Louiza
Howard, Heidi Carmen
Slokenberga, Santa
Fisher, Eva
Flatscher-Thöni, Magdalena
Hartlev, Mette
van Hellemondt, Rachel
Juškevičius, Jonas
Kapelańska-Pręgowska, Julia
Kováč, Peter
Lovrečić, Luca
Nys, Herman
de Paor, Aisling
Phillips, Andelka M.
Prudil, Lukáš
Rial-Sebbag, Emmanuelle
Romeo Casabona, Carlos M.
Sándor, Judit
Schuster, Alexander
Soini, S.
Søvig, Karl Harald
Stoffel, D.
Titma, Tiina
Trokanas, T.
Borry, Pascal
Howard, Heidi Carmen
Slokenberga, Santa
Fisher, Eva
Flatscher-Thöni, Magdalena
Hartlev, Mette
van Hellemondt, Rachel
Juškevičius, Jonas
Kapelańska-Pręgowska, Julia
Kováč, Peter
Lovrečić, Luca
Nys, Herman
de Paor, Aisling
Phillips, Andelka M.
Prudil, Lukáš
Rial-Sebbag, Emmanuelle
Romeo Casabona, Carlos M.
Sándor, Judit
Schuster, Alexander
Soini, S.
Søvig, Karl Harald
Stoffel, D.
Titma, Tiina
Trokanas, T.
Borry, Pascal
Editors
Keywords
URI
http://hdl.handle.net/20.500.14018/13301
Abstract
Despite the increasing availability of direct-to-consumer (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.
Topic
Publisher
Place of Publication
Type
Journal article
Date
2018
Language
ISBN
Identifiers
http://dx.doi.org/10.1007/s12687-017-0344-2