ELSAIDTCGT
"Ethical, Legal, and Social Aspects and Implications of Direct-to-Consumer Genetic Testing"
| Coordinatore | KATHOLIEKE UNIVERSITEIT LEUVEN
Organization address
address: Oude Markt 13 contact info |
| Nazionalità Coordinatore | Belgium [BE] |
| Totale costo | 0 € |
| EC contributo | 220˙226 € |
| Programma | FP7-PEOPLE
Specific programme "People" implementing the Seventh Framework Programme of the European Community for research, technological development and demonstration activities (2007 to 2013) |
| Code Call | FP7-PEOPLE-IIF-2008 |
| Funding Scheme | MC-IIF |
| Anno di inizio | 2009 |
| Periodo (anno-mese-giorno) | 2009-05-22 - 2011-05-21 |
Partecipanti
| # | ||||
|---|---|---|---|---|
| 1 |
KATHOLIEKE UNIVERSITEIT LEUVEN
Organization address
address: Oude Markt 13 contact info |
BE (LEUVEN) | coordinator | 220˙226.80 |
Mappa
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Obiettivo del progetto (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).'
Introduzione (Teaser)
As technology and knowledge advance, so do consumer products and companies looking to benefit from new markets. This has raised a debate in the healthcare arena in relation to direct-to-consumer (DTC) genetic testing, a service that changes and bypasses the traditional patient-doctor relationship.