The Right 'not' to know

The right not to know protects people from obtaining information about their own health situation if they do not possess this information or do not wish to obtain it. The Genetic Diagnosis Act takes particular account of circumstances in which information about one's own state of health can be associated with psychological stress for those affected.

The right not to know is an expression of the freedom of the person concerned to decide on the knowledge of individual health dispositions. Like the right to knowledge, it is categorised as informational self-determination (see module "Right to informational self-determination") and is enshrined in Section 1 GenDG.

For example, in The 'right' not to know, Ost, D. E. (1984) argues that autonomy requires knowledge. Without adequate information, no "efficient self-determination" is possible. Ost sees an advantage of rejecting random findings in the lower psychological burden, which, according to him, is always at the expense of autonomy.

Further information:        

Propping, P. / Aretz, S. / Schumacher, J. / Taupitz, J. / Guttmann, J. / Heinrichs, B. (2006): Prädiktive genetische Testverfahren. Naturwissenschaftliche, rechtliche und ethische Aspekte. Ethik in den Biowissenschaften – Sachstandsberichte des DRZE, Bd. 2. Freiburg i. Br.: Verlag Karl Alber. (German)

Bundesministerium für Gesundheit (12. April 2016): Glossar. Gendiagnostikgesetz. Online Version (German)

Lenk, C. / Frommeld, D. (2015): Different concepts and models of information for family-relevant genetic findings: comparison and ethical analysis. In: Medicine, Health Care and Philosophy 18 (3): 393–408. doi: 10.1007/s11019-015-9638-5

Duttge, G. (2015): Rechtlich-Normative Implikationen des Rechts auf Nichtwissen in der Medizin. In: Wehling, P. (ed.): Vom Nutzen des Nichtwissens. Sozial- und kulturwissenschaftliche Perspektiven. Bielefeld: Transcript, 75–91. (German)

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