Analysis of the Reasons for Non-Uptake of Predictive Testing for Huntington's Disease in Spain: A Qualitative Study.
Children of persons affected by Huntington's disease (HD) have a 50% chance of inheriting the disease. Genetic testing in Spain is offered to individuals (presymptomatic test) or mothers of fetuses (prenatal) who run the risk of suffering from HD. The objective of this study is to analyze the factors that influence the decisions of adult children of persons affected with HD regarding predictive testing. A qualitative research methodology was used involving 4 focus groups (FGs) made up of adult children of persons with HD in different cities in Spain. The results of the study showed that over half of the focus group participants were inclined to decline genetic testing. The main explanatory determinants for taking or not taking the predictive test are: Maturity of the individual at risk, which was directly related to age; Ability to cope with a positive test result; Experience of living with HD sufferers; Information about testing and psychological support; Attitude of the family; Social visibility of genetic testing; Personality and temperament of each subject at risk of HD. These results imply that these factors should be analyzed in more detail in quantitative studies in order to help the Spanish Department of Health understand why some children of parents with HD decline genetic testing, so that they may and apply these data when creating specific policy regarding this issue.
Facultad de Ciencias Sociales (despacho 412), Campus Miguel de Unamuno, Avda Francisco Tomas y Valiente S/N, Universidad de Salamanca, 37007, Salamanca, Spain. jrivera@usal.es.
Jesús
J
Rivera-Navarro
Neurology Department, Hospital Universitario Burgos, Burgos, Spain.
Esther
E
Cubo
Neurology Department, Hospital Universitario Burgos, Burgos, Spain.
Natividad
N
Mariscal
D000328:Adult; D001294:Attitude to Health; D016241:Child of Impaired Parents / Q000523:psychology*; D005260:Female; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing / Q000706:statistics & numerical data*; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis / Q000235:genetics / Q000517:prevention & control*; D008297:Male; D008875:Middle Aged; D010551:Personality; D036301:Qualitative Research; D013030:Spain / Q000453:epidemiology
Explanatory factors; Genetic testing; Huntington’s disease; Qualitative method