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Minerva Medica 2011 April;102(2):149-59

language: English

Guidelines for genetic counselling for neurological diseases: ethical issues

Petrini C.

Bioethics Unit, National Institute of Health, Rome, Italy


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Genetic testing are available for a long list of neurodegenerative diseases. The most authoritative scientific and health-care institutions agree that dementia is going to be one of the major problems and most challenging priorities for public health care in upcoming years. Genetic counselling is a complex field. Technically speaking, the term “guideline” has a very specific meaning. Several guidelines for genetic testing for neurology diseases are available. The article summarizes, from an ethical perspective, the main guidelines for genetic counselling in the neurological filed and suggests four main conclusions: 1) guidelines contain a superabundance of indications for genetic counselling for persons who are potentially at risk of developing neurological disorders, but perhaps are lacking with regard to the question of genetic counselling for persons already affected by mental disorders; 2) there is a risk that genetic testing abuses for disorders of neurological complexity will lead to confusion; 3) there is a risk that confusion will derive not only from the overuse of genetic testing, but also from the proliferation of guidelines; 4) codes and guidelines do not eliminate the need for ethical awareness in interpreting them.

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carlo.petrini@iss.it