The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: implications for multidisciplinary counselling and for genetic education.
Increasing knowledge about the human genome has resulted in the availability of a steadily increasing number of predictive DNA-tests for two major categories of diseases: neurogenetic diseases and hereditary cancers. The psychological complexity of predictive testing for these late onset diseases requires careful consideration. It is the main aim of the present paper to describe this psychological complexity, which necessitates an adequate and systematic multidisciplinary approach, including psychological counselling, as well as ongoing education of professionals and of the general public. Predictive testing for neurogenetic diseases--in an adequate counselling context--so far elicits optimism regarding the short- and mid-term impact of the predictive test result. The psychosocial impact has been most widely studied for Huntington's disease. Longitudinal studies are of the utmost importance in evaluating the long-term impact of predictive testing for neurogenetic diseases on the tested person and his/her family. Given the more recent experience with predictive DNA-testing for hereditary cancers, fewer published scientific data are available. Longitudinal research on the mid- and long-term psychological impact of the predictive test result is essential. Decision making regarding health surveillance or preventive surgery after being detected as a carrier of one of the relevant mutations should receive special attention. Tailoring the professional approach--inside and outside genetic centres--to the families' needs is a continuous challenge. Even if a continuous effort is made, several important questions remain unanswered, last but not least the question regarding the best strategy to guarantee that the availability of predictive genetic testing results in a reduction of suffering caused by genetic disease and in an improvement of the quality of life of families confronted with genetic disease.
Evers-Kiebooms
G
G
Psychosocial Genetics Unit, Center for Human Genetics, K.U. Leuven, Belgium.
Welkenhuysen
M
M
Claes
E
E
Decruyenaere
M
M
Denayer
L
L
D003376:Counseling; D005817:Genetic Counseling; D020271:Heredodegenerative Disorders, Nervous System / Q000235:genetics* / Q000523:psychology; D006801:Humans; D009386:Neoplastic Syndromes, Hereditary / Q000235:genetics* / Q000523:psychology; D010348:Patient Care Team; D010353:Patient Education as Topic; D011237:Predictive Value of Tests; D011379:Prognosis; D011788:Quality of Life