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FP7 Dynamic Database

Name Ethical, legal, and social aspects and implications of direct-to-consumer genetic testing
Area FP7-PEOPLE-IIF-2008 Marie Curie Action:
Start Date2009-05-22
Duration 24 months
Status Accepted
DescriptionWith ongoing genetic discoveries and improvements in technology, more genetic tests are made available in a clinical context than ever before. Along with the increase in genetic tests offered there has been a recent rise in companies providing various genetic tests directly-to-consumers (DTC) bypassing the traditional face-to-face meeting with a health care professional. DTC genetic tests have generated various concerns with regard to tests analytical and clinical validity, as well as clinical utility; issues related to the quality of pre- and post-test counseling; and the lack of legal regulation
The overall objectives of this research project are to investigate the ethical, legal and social aspects and implications of the provision of genetic tests directly to consumers as is currently done by various companies. Five specific goals form the basis of this work: Firstly, a systematic and in-depth review of the field of DTC companies will be performed using content analysis of company web sites. Secondly, this project aims to compare the existing regulatory framework of DTC genetic testing in Europe and North-America (US and Canada). Thirdly, the attitudes of European and North-American geneticists regarding the provision of direct-to-consumer genetic services will be surveyed and analyzed. Fourthly, as a case study of such services, companies offering tests for psychiatric diseases as well as the potential consequences of such services will be investigated.

Finally, the last goal will be to disseminate the knowledge developed and to stimulate international and interdisciplinary collaboration by developing a website and organizing an international workshop, network, and conference. Dr. Heidi Howard, (Ph.D. Genetics 2003, MA Bioethics 2008) will, by her background in genetics and ethics, provide a complimentary approach to the multidisciplinary character of the Centre for Biomedical Ethics and Law (K.U.Leuven).
ContactDELAURÉ, Stijn (Dr) (Contact )
Tel / Fax +32-16320944 / +32-16324198

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