In genetic disease, who has the right to know—or not know—what?

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In genetic disease, who has the right to know—or not know—what?
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Cases in Britain and Germany are at odds with each other

information-saturated age, what happens when the right to know comes up against the right not to know? The ease of genetic testing has brought this question to the fore. Genes, some of which contain disease-causing mutations, are shared within families, meaning the results of a test for a genetic condition inevitably affect more people than the one who consented to be tested.

Initially the case was struck out, on the grounds that letting it go to trial would risk undermining doctor-patient confidentiality. But in 2017 that decision was overturned. The appeal court concluded that situations could arise where a doctor had a duty of disclosure to a patient’s relatives, and that preventing the trial on the grounds that it posed a threat to the doctor-patient relationship was therefore not necessarily in the public interest.

The German case is in some ways the mirror image of the British one. Unlike in Britain, in Germany the right not to know genetic information is protected in law. Nevertheless, in 2011 a doctor informed a woman living in Koblenz that her divorced husband—the doctor’s patient—had tested positive forShe sued the doctor, who had acted with his patient’s consent.

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