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). Karl Alber. https://www.drze.de/en/research-publications/expert-reports/volume-2
German National Academy of Sciences (Leopoldina), German Academy of Science and Engineering, Berlin Brandenburg Academy of Sciences and Humanities, & Union of the German Academies of Sciences and Humanities (2011). Predictive Genetic Diagnostics as an Instrument of Disease Prevention [Statement]. Deutsche Akademie der Naturforscher Leopoldina e.V. https://www.leopoldina.org/uploads/tx_leopublication/201011_natEmpf_praedikative-EN_03.pdf
Bundesministerium für Gesundheit. (2025, June 16). Gendiagnostikgesetz. https://www.bundesgesundheitsministerium.de/service/begriffe-von-a-z/g/gendiagnostikgesetz.html
Lenk, C., & Frommeld, D. (2015). Different concepts and models of information for family-relevant genetic findings: comparison and ethical analysis. Medicine, health care, and philosophy, 18(3), 393–408. https://doi.org/10.1007/s11019-015-9638-5
Duttge, G. (2015). Rechtlich-Normative Implikationen des Rechts auf Nichtwissen in der Medizin. In P. Wehling (Eds.), Vom Nutzen des Nichtwissens. Sozial- und kulturwissenschaftliche Perspektiven (p. 75–91). Transcript. https://doi.org/10.1515/9783839426296-002
Duttge, G. (2014). Recht auf Wissen/Recht auf Nichtwissen. In C. Lenk, G. Duttge & H. Fangerau (Eds.), Handbuch Ethik und Recht der Forschung am Menschen (p. 233–237). Springer. https://doi.org/10.1007/978-3-642-35099-3_39
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 psychiatric genetic research projects: practical considerations. Molecular psychiatry, 17(12), 1180–1185. https://doi.org/10.1038/mp.2012.11