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Direct-to-consumer genetic testing (2012)

Direct-to-consumer genetic testing for health-related purposes in the European Union: the view from EASAC and FEAM

 

(2012, 36 Seiten, ISBN: 978-3-8047-3083-0)

Until recently, human genetic testing was mainly confined to specialist medical genetic services, traditionally focusing on the relatively rare inherited disorders. However, the rapid pace of advance in DNA analysis has led to increasing interest in the development of genetic tests for determining susceptibility to the more common, complex disorders. Such tests are increasingly being offered by companies through the internet.

These consumer genetic services raise scientific, regulatory and ethical questions. Various concerns have been expressed about the quality and validity of the direct-to-consumer genetic testing offered, the clinical usefulness of the information supplied and the implications for the consumer, their family and the public health services. These issues affect all of us and are of sufficient importance and relevance to warrant attention by all the national academies in the European Union (EU). Our Report represents the first joint project between the academies of science in EASAC (the European Academies Science Advisory Council) and of medicine in FEAM (the Federation of European Academies of Medicine); we decided to collaborate on this occasion and in this way to draw upon the widest possible expertise in the scientific disciplines and experience in the Member States.

Leopoldina

Dr. Christiane Diehl

Stellv. Abteilungsleiterin Internationale Akademiennetzwerke (IAP, EASAC)

Tel. 0345 - 47 239 - 831
Fax 0345 - 47 239 - 839
E-Mail christiane.diehl @leopoldina.org

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