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Content archived on 2024-06-18

Ethical, Legal, and Social Aspects and Implications of Direct-to-Consumer Genetic Testing

Objective

With 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 counselling; 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 indepth 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).

Fields of science (EuroSciVoc)

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Keywords

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Topic(s)

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Call for proposal

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FP7-PEOPLE-IIF-2008
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Funding Scheme

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MC-IIF - International Incoming Fellowships (IIF)

Coordinator

KATHOLIEKE UNIVERSITEIT LEUVEN
EU contribution
€ 220 226,80
Address
OUDE MARKT 13
3000 Leuven
Belgium

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Region
Vlaams Gewest Prov. Vlaams-Brabant Arr. Leuven
Activity type
Higher or Secondary Education Establishments
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Total cost

The total costs incurred by this organisation to participate in the project, including direct and indirect costs. This amount is a subset of the overall project budget.

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