Article Text

Download PDFPDF
Shared decision making and non-directiveness in genetic counselling
  1. Glyn Elwyna,
  2. Jonathon Grayb,
  3. Angus Clarkeb
  1. aDepartment of Postgraduate Education for General Practice and Department of General Practice, University of Wales College of Medicine, Cardiff CF4 4XN, UK, bInstitute of Medical Genetics, University of Wales College of Medicine, Cardiff CF4 4XN, UK
  1. Dr Elwyn, elwynG{at}

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

The term “genetic counselling” (GC) covers many different 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 different 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.

There are good reasons why clinical geneticists and genetic counsellors might wish to claim that their work is non-directive.4Such a stance is in keeping with the contemporary dominance of autonomy over the other recognised principles of medical ethics.5It protects the profession from an easy confusion with, and moral contamination from, the eugenics movement, and this will be useful to …

View Full Text