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Is genetic testing privacy respecting?

Patient participation in health-care decisions should be guaranteed by the ethical doctrine of informed consent. But is it always like this? At ISTC several social and psychological studies showed that patients' privacy is not always respected when talking about genetic testing. 

Informed consent is a well-established practice in clinical medicine, which in the last years has been extended to the genetic testing field. However, the two contexts are quite different from each other: genetic information is so delicate that it always needs an adequate genetic counseling.

Despite this, in Italy there is a diffuse trend to perform genetic testing as a "normal" laboratory analysis, asking blood samples from people at risk without any specific counseling. At ISTC researchers lead qualitative and quantitative studies to analyze the diffusion of this malpractice. Results showed that in theory all professionals involved in genetic testing services seem to agree that freedom of choice and privacy are the basic principle; but this is in practice far from been guaranteed.

An emblematic example is the case of a guy who accompanied his father affected by Huntington's disease to a Neurology center for the diagnostic genetic testing. The doctor took the father's blood and at the same time convinced the son to do the presymptomatic test. The guy never succeeded in receiving his testing result.

ISTC researchers collected and evaluated a big number of similar cases, concluding that genetic testing in Italy often is not privacy respecting. For this reason, there is a growing need of making quality controls of the analyses laboratories, of creating an official register of centers offering genetic testing and of establishing an Authority to guarantee patients' privacy. 

Contact: Gioia Jacopini