caa a22 4500 605544360 CHVBK 20210128100931.0 cr unu---uuuuu 210128e20151201xx s 000 0 eng 10.1007/s10897-015-9840-x doi (NATIONALLICENCE)springer-10.1007/s10897-015-9840-x Analysis of the Reasons for Non-Uptake of Predictive Testing for Huntington's Disease in Spain: A Qualitative Study [Elektronische Daten] [Jesús Rivera-Navarro, Esther Cubo, Natividad Mariscal] 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. National Society of Genetic Counselors, Inc., 2015 Huntington's disease nationallicence Genetic testing nationallicence Explanatory factors nationallicence Qualitative method nationallicence Rivera-Navarro Jesús Facultad de Ciencias Sociales (despacho 412), Campus Miguel de Unamuno, Avda Francisco Tomas y Valiente S/N, Universidad de Salamanca, 37007, Salamanca, Spain aut Cubo Esther Neurology Department, Hospital Universitario Burgos, Burgos, Spain aut Mariscal Natividad Neurology Department, Hospital Universitario Burgos, Burgos, Spain aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/6(2015-12-01), 1011-1021 1059-7700 24:6<1011 2015 24 10897 https://doi.org/10.1007/s10897-015-9840-x text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-015-9840-x text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Rivera-Navarro Jesús Facultad de Ciencias Sociales (despacho 412), Campus Miguel de Unamuno, Avda Francisco Tomas y Valiente S/N, Universidad de Salamanca, 37007, Salamanca, Spain aut NATIONALLICENCE 700 1- Cubo Esther Neurology Department, Hospital Universitario Burgos, Burgos, Spain aut NATIONALLICENCE 700 1- Mariscal Natividad Neurology Department, Hospital Universitario Burgos, Burgos, Spain aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/6(2015-12-01), 1011-1021 1059-7700 24:6<1011 2015 24 10897