TABLE 1.

French guidelines for genetic counselling: key points of decree 2008-321 of April 4, 2008

The person is informed about the disease characteristics, detection techniques, genetic analysis sensitivity, prevention and treatment possibilities, genetic modality of the disease transmission and consequences for the other family members

Informed written consent is mandatory

Patient aged <18 years and adults under guardianship must agree with the genetic testing, whereas the informed written consent must be signed by the legal representative

The genetic counselling must be performed in an individual consultation

For asymptomatic high-risk relatives, the genetic counselling must be performed in an individual consultation. This presymptomatic diagnosis requires a multidisciplinary approach involving geneticists, pulmonologists, genetic counsellors, psychologists and nurses. This team is registered to the biomedical agency and follows their recommendations

Genetic testing can be prescribed in asymptomatic high-risk relatives aged <18 years or in adults under guardianship, only if he/she or his/her family can benefit from preventive or curative treatments

Genetic testing is performed under the responsibility of a physician allowed by Article R.1131-9, practicing in one of the institutions listed in Article R.1131-13. This physician is the only one authorised to sign the genetic results

The genetic testing can only be performed in biological laboratories of public health institutions, cancer centres, biological laboratories mentioned in Article L.6211-2 and in biological laboratories of the French blood bank centres authorised by Article R.11301-14

The prescriber must inform directly the person who underwent the genetic testing in an individual consultation

The person who underwent the genetic testing can refuse to know the result

Reproduced from [49] with permission.