Shared decision making and non-directiveness in genetic counselling

G Elwyn, J Gray, A Clarke - Journal of medical genetics, 2000 - jmg.bmj.com
G Elwyn, J Gray, A Clarke
Journal of medical genetics, 2000jmg.bmj.com
The term “genetic counselling”(GC) covers many diVerent activities, but at its core it is a
process of communication. 1 It can refer to the diagnostic assessment of a child with multiple
developmental problems. It can describe the facilitation of a decision making process in
relation to predictive genetic testing for a late onset disorder. It can relate to a decision about
prenatal diagnosis or the termination of a pregnancy at risk of a serious inherited disease.
Topics discussed within GC can include plans for the continuing medical management of a …
The term “genetic counselling”(GC) covers many diVerent activities, but at its core it is a process of communication. 1 It can refer to the diagnostic assessment of a child with multiple developmental problems. It can describe the facilitation of a decision making process in relation to predictive genetic testing for a late onset disorder. It can relate to a decision about prenatal diagnosis or the termination of a pregnancy at risk of a serious inherited disease. Topics discussed within GC can include plans for the continuing medical management of a person at risk of complications of a genetic disease, and can encompass whether or how to broach the topic of genetic disease with other members of the extended family. The nature of the clinic discussion of these diVerent elements of GC will vary greatly, and any one consultation is likely to entail a discussion of only one or a few from the full range of possible topics.
Clinical geneticists, in contrast to most other medical practitioners, are said to espouse a “non-directive” method of “counselling” clients. 2 3 This is generally taken to mean that clinical geneticists are trying to help their clients arrive at the best decisions from personal perspectives and are not guiding them towards any particular decision (for example, to test or not to test, to terminate a pregnancy or to continue it). Whether non-directiveness (ND) is attainable, however, remains unclear and contested.
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