Signed and Ratified
Patient Rights in Portugal
 Rights of Users of Genetic Services

Right to Informed Consent

Right to Information about his or her Health
Rights regarding the Medical File
Right to Privacy
Prohibition of Discrimination
Predictive Genetic Tests

 

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Article 9 of the law n° 12/2005 is entitled “genetic tests”. Apart from §1 that has already been cited above (see §1) it disposes as follows:
“(…)2. The detection of the heterozygosity status for the diagnosis of recessive diseases, the presymptomatic diagnosis of monogenic diseases and the tests of genetic susceptibility in healthy persons can only be carried out by request of a medical geneticist, following a genetic counselling consultation and subject to the express written and informed consent of the person in question.
3. The results of genetic testing should only be communicated to the person whom they concern or, in case of diagnostic testing, to the legal representative or to the person designated by the person concerned and during a proper medical consultation.

In the case of heterozygosity, presymptomatic and predictive testing, the results should only be communicated to the person whom they concern and can never be communicated to third parties without his/her written express consent – this also refers to physicians or other health care professionals working for other departments of the health institution in question or for the same departments or services, but who are not involved in the process of testing of the person in question or of his/her family.

In case of prenatal and preimplantation testing, the results should only be communicated to the mother, to the parents or to their legal representatives.

Presymptomatic, predictive and preimplantation tests should not be performed in persons suffering from mental disablement and who cannot fully appreciate the implications of this type of tests or give their informed consent to its execution.

In situations of risk of severe, late-onset diseases that appear in the beginning of adulthood and that have no cure or proven effective treatment, the performance of any presymptomatic or predictive testing must be preceded by a previous psychological and social evaluation and by the follow-up of the patient after the delivery of the tests results.

The frequency of the genetic counselling consultations and the form of the psychological and social follow-up should be determined based on the severity of the disease, on the usual age of manifestation of the first symptoms and on the existence, or not, of a proven treatment”.

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