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

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Date
2018-04
Author
Kalokairinou, L.
Howard, H. C.
Slokenberga, S.
Fisher, E.
Flatscher-Thöni, M.
Hartlev, M.
Van Hellemondt, R.
Juškevičius, J.
Kapelenska-Pregowska, J.
Kováč, P.
Lovrečić, L.
Nys, H.
De Paor, A.
Phillips, A.
Prudil, L.
Rial-Sebbag, E.
Romeo Casabona, Carlos María ORCID
Sándor, J.
Schuster, A.
Soini, S.
Søvig, K. H.
Stoffel, D.
Titma, T.
Trokanas, T.
Borr, P.
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  Estadisticas en RECOLECTA
(LA Referencia)

Journal of Community Genetics 9(2) : 117-132 (2018)
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http://hdl.handle.net/10810/30364
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.
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Except where otherwise noted, this item's license is described as This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.