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 under 18 years old 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 done in an individual consultation. |
For asymptomatic high-risk relatives, the genetic counselling must be done in an individual consultation. This pre-symptomatic 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 under 18 years old or in adults under guardianship, only if their family can benefit from preventive or curative treatments. |
Genetic testing are 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 informs 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. |