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Legislation of direct-to-consumer genetic testing in Europe:: a fragmented regulatory landscape
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
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2018 (English)In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 117-132Article, review/survey (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2018. Vol. 9, no 2, p. 117-132
National Category
Medical Ethics
Research subject
Medical Law
Identifiers
URN: urn:nbn:se:uu:diva-334079DOI: 10.1007/s12687-017-0344-2ISI: 000427515200002PubMedID: 29150824OAI: oai:DiVA.org:uu-334079DiVA, id: diva2:1158661
Note

This article is part of the Topical Collection on Citizen’s Health throughpublic-private Initiatives: Public health, Market and Ethical perspectives.

Available from: 2017-11-20 Created: 2017-11-20 Last updated: 2018-05-30Bibliographically approved

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Howard, Heidi CarmenSlokenberga, Santa

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