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Prenatal testing for Huntington's disease: the psychosocial, ethical and legal complexity of prenatal testing for a late onset disease


"Prenatal" genetic testing will increasingly be capable of detecting incurable "late onset" diseases. Huntington's disease (HD) is just one such disease, the first late onset disease for which adult predictive testing as well as prenatal testing has become available. In contrast to the international attention paid to adult predictive testing, little is known about the practice of prenatal testing for HD and about the factors influencing the decision to use prenatal testing. Only studies on rather small samples, limited to a short term follow-up, have been published. A purely quantitative and incomplete world survey about prenatal testing for HD before 1995 revealed that the overall uptake was low in most countries. There were considerable differences from one country to another, also in Europe.

The present proposal aims to:
1. give a detailed quantitative as well as qualitative picture of prenatal testing for HD (direct testing, exclusion testing and guided exclusion testing) in six European genetic centres that played a major role in initiating and developing adult predictive testing for HD in their country;
2. get insight into the complex process of reproductive decision-making of carriers of the Huntingdon gene (at reproductive age);
3. delineate the factors that explain the differences (in uptake, type of prenatal test, etc) from one European country to another;
4. stimulate discussion about the empirical findings between experts from the medical and psychological fields who are working in the genetic centres, experts in ethical and legal aspects of predictive genetic testing, and members of the European Huntingdon Association;
5. analyse the ethical and legal implications of specific types of prenatal testing for HD, and of specific parental decisions (eg the wish to continue a pregnancy in the case of an unfavourable prenatal test result, which may be in conflict with the potential child's right NOT to know). The future availability of preimplantation diagnosis will also be considered;
6. use the experience gained from HD for constructing a model system for the complex ethical, social and legal aspects of prenatal testing in incurable late onset dominant genetic disease.

Prenatal testing, Huntington's dusease, reproductive decision making, predictive testing.

Call for proposal

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EU contribution
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