1. ¹Psychosocial Genetics Unit, University of Leuven, Herestraat, Leuven, Belgium
2. ²Department of Psychiatry, University of Leuven, Herestraat, Leuven, Belgium
3. ³Department of Neurology, University of Leuven, Herestraat, Leuven, Belgium
4. ⁴Center for Human Genetics, University Hospital Gasthuisberg, University of Leuven, Herestraat, Leuven, Belgium

Correspondence: Dr M Decruyenaere, University Hospital Gasthuisberg, Center for Human Genetics, Herestraat 49, Leuven, B-3000, Belgium. Tel: +32 16 345874; Fax: +32 16 346051; E-mail: marleen.decruyenaere@uzleuven.be

Received 15 June 2006; Revised 16 October 2006; Accepted 5 December 2006; Published online 24 January 2007.

Abstract

The aim of this study was to describe reproductive decisions in mutation carriers after predictive testing for Huntington's disease (HD) and to identify factors that play a role in decision-making. In 1987–2004, 245 individuals received a predictive test result; 89 of them were carriers and seven received an equivocal result. Quantitative data on reproductive behaviour have been collected during all follow-up contacts. The follow-up time in this study was 1–16 years (mean: 7.1 years). Qualitative data on reproductive decision-making have been collected by the means of semistructured interviews during the 5-year follow-up study.

For 46 carriers and two persons with an equivocal result, family planning was one of the motives for predictive testing. In this group, slightly more than half of the carriers (58%) had chosen to have children with prenatal diagnosis or preimplantation genetic diagnosis and about one in three (35%) decided to have no children anymore after the test. A minority (7%) was undecided or had no children for other reasons. Factors playing a role in the decision-making process were the carrier's sex, ethical issues about PD and PGD, the strength of the desire to have children, illness representations including personal experiences with HD in the family and the technological imperative. Some of these elements were in conflict and induced ambivalence towards reproductive choices. The results illustrate the complexity of the decision-making process and the necessity of in-depth counselling. Counselling should pay special attention to conflicting values and beliefs and to all kinds of pressure.