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FP6

GENETESTINGCHILDREN Résumé de rapport

Project ID: 40299
Financé au titre de: FP6-MOBILITY
Pays: Germany

Final Activity Report Summary - GENETESTINGCHILDREN (Right to an Open Future?: An Ethnographic study of parents and professionals experiences of the diagnostic and predictive genetic testing ...)

The project addressed emerging questions relating to the diagnostic and predictive genetic testing of children in an era of genomics. In much of the scientific and popular literature, a distinction has previously been made between predictive genetic testing and diagnostic genetic testing. In recent years, these categories have become increasingly complex and permeable due to innovations in testing technologies and understandings of genomics, but also as a result of an increasingly large number of research projects which involve population-based testing.

A key outcome of this project is the identification of particular emerging areas that are in need of close social science engagement. Specifically, the outcomes of the literature and public representations research highlight the complexity of both decision-making and governance in relation to the genetic testing of children in the light of advancing information and communication technologies and market/consumer-oriented contexts. With the advancement of direct to consumer marketing of 'health' products and devices, as well as the practice of on-line selling and purchasing of 'do-it-yourself' testing kits, the practice of genetic testing has the potential to significantly move away from clinic and laboratory sites, which previously also served as an indication of the amount and form of testing on children that was being carried out, and into personal and family spheres.

Additionally, the research identified the need for closer attention to the social and economic implications of genetic testing with respect to adoption. What types of genetic testing might be requested or carried out prior to the placement of a child with adoptive parents? What are the (social and economic) consequences of such genetic 'knowledge' being produced at particular stages of a child's life? The research fellow, Dr Jacquelyne Luce, also successfully completed a number of activities designed to enhance her career prospects such as intensive language training, the effective dissemination of research results, teaching, proposal development and grant negotiation.

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