ABSTRACT
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.
ABSTRACT
New technologies and more research in genetics have revealed an increasing amount of genetic data and identified new diseases. In parallel to the wider availability of genetic testing, efforts have been made to regulate the use of genetic technology and genetic information. The swift pace of developments, not surprisingly, may cause uncertainty among those confronted with genetics. The authors review the current state of genetic testing with a focus on movement disorders. They introduce terminology (inheritance patterns; penetrance; clinical and genetic heterogeneity and types of testing, including influences of direct-to-consumer testing) and discuss general aspects of genetics, including indication for testing, familial implications as well as social, ethical, and in particular legal implications (discrimination acts, insurance aspects, protection of data of deceased, etc.). They also cover recent developments with regard to new molecular techniques, economic issues, and the difficulties of data interpretation.
