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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Except for some detailed regulation related to specific types of genetic tests, the general regulation on the right to informed consent also applies for genetic testing.
Article 156 §1 of this Code stipulates the following: “Persons mentioned in article 150 who, by virtue of the above-mentioned aims, carry out interventions or treatments without the consent of the patient shall be punished with the penalty of up to 3 years imprisonment or fine”.

Specific regulation on informed consent can be found in article 9, section 2 and 6. These sections stipulate:
“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.
6. 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”.
It is not clear whether in the situations described in article 9, section 1 (genetic diagnostic or pharmacogenetic testing) consent should be given in writing.

Besides the right to informed consent to a genetic test, article 17, section 2 describes for certain types of genetic testing a right to refuse. It reads:
“Every citizen has the right to refuse submitting to a genetic test concerning the heterozygosity status or to a presymptomatic, predictive or prenatal test”.

A special regulation related to informed consent in case of genetic testing on minors can also be found in article 17. Section 4, 5 and 6 state:
“4. The genetic testing of minors can only be requested if the tests are done in the benefit of the minors – and never in their prejudice – with written consent from their parents or legal tutors and always seeking first the minors own consent.
5. In particular, no predictive tests on minors can be requested, regarding late-onset diseases that usually begin in adulthood and that have no cure or proven effective preventive treatment.
6. The former also applies to the prenatal diagnosis of diseases that usually begin in adulthood and that have no cure - the diagnosis cannot be done just for information of the parents but only with the aim of preventing the disease or the deficiency and this within the time limits established by law”.

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