Germany

Resources

This page is intended to present key information on privacy and genetic research relevant to Germany. It contains links to key German public attitudes surveys and reports from relevant organisations. Please use the contact pages to make any suggestions or to inform us of any new research.

Language of privacy

In German language the concept of privacy is best translated as privatsphäre (which exactly means ‘private sphere’). The private sphere characterises the domain of a person which is not public and guarantees the respect of human dignity and the right to free development of one’s personality.

Eurobarometer

• Directorate General Press and Communication (2005) Social values, science and Technology (Special Eurobarometer 225/ Wave 63.1). EC Directorate General Research. Relevant questions: Q15.a.3, Q17.
• Gaskell, George et al (2006) European and Biotechnology in 2005: Patterns and Trends (Eurobarometer 64.3). London, London School of Economics. A report to the European Commission’s Directorate-General for Research. Relevant question: Q5.3.

Relevant Interests Expressed by the Public

The PRIVILEGED network member for Germany reported no direct studies.

Relevant Interests Expressed in Different Contexts

Genetic Testing

• Stiftung Deutsches Hygiene-Museum (2001) held a Citizen’s Conference on Genetic Testing
• Wertz, D., Irmgard N. and Gerhard W. (2003) Patient and Professional Responsibilities in Genetic Counselling. In Sass, H-M., and Schröder, P. Patienten- und Bürgeraufklärung über genetische Risikofaktoren. Münster u.a.: Lit-Verlag.

Privacy and Security

• PRISE Project (Privacy enhancing shaping of security research and technology – A participatory approach to develop acceptable and accepted principles for European Security Industries and Policies). EC-funded project. German citizens interviewed to investigate their attitude towards privacy and security.
  • D 5.4 German report - Interview meeting about security technologies and privacy.
  • Annexes to D 5.4 German report

Organisations and Industry Reports

• German Medical Association (Deutsche Ärztekammer) Central Ethics Commission (2003) Die (Weiter-)Verwendung von menschlichen Körpermaterialien für Zwecke medizinischer Forschung.
• National Ethics Council (Nationaler Ethikrat) (2004) Biobanks for Research: Opinion, Berlin.
• Office of Technology Assessment at the German Parliament (TAB) (2006) Working Report No. 112: Biobanks for Human Medical Research and Application.
• TAB (2000) Working Report No. 66: Genetic Diagnostics - Status and Prospects

Of Interest

• Burgermeister, J. (2003) Teacher was refused job because relatives have Huntington’s disease. British Medical Journal, Vol. 327 (7419), 827-a.
• Germany data protection information at Privireal
• Lemke, T., and Christiane L. (2005) Formen und Felder genetischer Diskriminierung. Ein Überblick über empirische Studien und aktuelle Fälle. van den Daele, W. (ed.), Biopolitik, Wiesbaden: Verlag für Sozialwissenschaften, 45-70.
• Lemke, Thomas (2006) Die Polizei der Gene. Formen und Felder genetischer Diskriminierung. Frankfurt am Main/New York: Campus.
• Mechan-Schmidt, F. (2003) Teacher protests at gene bias, Times Educational Supplement, 14 November 2003.