Do We Have Right Not to Know?
Legal Questions Related to the Right Not to Know, With a Special Focus on the Field of Genetic Data
Abstract
In a broader sense, the right not to know means the right not to know health information, it raises specific issues in the field of genetic data, which also arise from the specific nature of genetic data and information, such as the involvement of family members or the way in which information is provided. The right not to know is closely linked to the concept of autonomy. This right shows up within a specific institutional relationship between the data subject and the health professional. In a German case, the question of whether the provision of information on genetic information which is not one's own constitutes a breach of the right not to know was put to the court. The study analyses the reception of the judgment in this case in the literature and the complex questions and regulations involved, with a necessary digression on the scientific background of genetic data and information.
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