The right not to know
The right not to know protects individuals from gaining information about their own health situation if they do not want to possess or obtain this information. The German Genetic Diagnostics Act particularly takes circumstances into account in which information about the state of health of a person may affect her or his mental health.
The right not to know is an expression of personal freedom of choice over the knowledge of individual health dispositions. Like the right to know, it is attributed to informational self-determination (on this topic, cf. module "Right to informational self-determination") and is enshrined in § 1 GenDG.
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. / Frommel, 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)
Duttge, G. (2014): Recht auf Wissen/ Recht auf Nichtwissen. In: Lenk, C. / Duttge, G. / Fangerau, H. (ed.): Handbuch Ethik und Recht der Forschung am Menschen. Berlin / Heidelberg: Springer, 233–237. (German)
Demiroglu, S. Y. / Skrowny, D. / Quade, M. / Schwanke, J. / Budde, M. / Gullatz, V. / Reich-Erkelenz, D. / Jakob, J.J. / Falkai, P. / Rienhoff, O. / Helbing, K. / Heilbronner, U. / Schulze, T. G. (2012): Managing sensitive phenotypic data and biomaterial in large-scale collaborative psychiatic genetic research projects: practical consideration. In: Molecular Psychiatry 17, 1180–1185.
German National Academy of Sciences (2011): Statement on Predictive Genetic Diagnostics as an Instrument of Disease Prevention. Berlin: Leopoldina, IV ff. Online Version