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Quality issues concerning genetic counselling for presymptomatic testing: a European Delphi study.


ABSTRACT: Genetic counselling for presymptomatic testing is complex, bringing both ethical and practical questions. There are protocols for counselling but a scarcity of literature regarding quality assessment of such counselling practice. Generic quality assessment tools for genetic services are not specific to presymptomatic testing (PST). Therefore, the aim of this study was to identify aspects of effective counselling practice in PST for late-onset neurological disorders. We used the Delphi method to ascertain the views of relevant European experts in genetic counselling practice, ascertained via published literature and nomination by practitioners. Ethical approval was obtained. Questionnaires were sent electronically to a list of 45 experts, (Medical Doctors, Geneticists, Genetic Counsellors a

SUBMITTER: Paneque M 

PROVIDER: S-EPMC4613464 | biostudies-literature | 2015 Nov

REPOSITORIES: biostudies-literature