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Rights and duties of genetic counsellors in Germany related to relatives at risk: comparative thoughts on the German Genetic Diagnostics Act
  1. Susanne A Schneider1,
  2. Uwe H Schneider2
  1. 1 Neurology, Ludwig-Maximilians Universität Munchen, Munchen, Germany
  2. 2 Schmitz Partner Frankfurt Law Firm, Frankfurt, Germany
  1. Correspondence to Professor Susanne A Schneider, Neurology, Ludwig-Maximilians-Universitat Munchen, Munchen, Bayern, Germany; s.schneider{at}


Genetic testing has familial implications. Counsellors find themselves in (moral) conflict between medical confidentiality (towards the patient) and a potential right or even duty to warn at-risk relatives. Legal regulations vary between countries. English literature about German law is scarce. We reviewed the literature of relevant legal cases, focussing on German law, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. This article aims to familiarise counsellors with their responsibilities, compare the situation between countries and point out legally unresolved areas.

According to the German Genetic Diagnostics Act (Gendiagnostikgesetz) in case of an ‘avoidable or treatable’ genetic disorder, geneticists ought to confine themselves to the obligated advice to the patient. Whether a breach of the duty of confidentiality can be justified in exceptional cases by ‘necessity as justification’ for actively informing relatives at risk remains legally unclear. In case of a ‘neither avoidable nor treatable’ genetic disease, geneticists should also refrain from actively informing relatives as the justifiable state of emergency does not permit to break the duty of confidentiality.

  • Genetic Counseling
  • Confidentiality
  • Family
  • Informed Consent

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  • Contributors SAS wrote the first draft; UHS provided critical review and discussion. SAS is the guarantor.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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