Genetics in Contemporary Germany: Regulatory Responses to Genetic Testing Options

Abstract

Germany has enacted specific laws determining the requirements for genetic examinations and genetic analyses. The Genetic Diagnosis Act (Gendiagnostikgesetz – GenDG) is seen as one of the most extensive of its kind in Europe. While the Act protects the individual's right to control the use of his/her personal genetic data, strengthens the right to self‐determination and sets requirements for increasing competences in genetic counselling within the scope of each medical subspecialty, the Act restricts the ability of individuals to access their own genetic information directly. PGD (preimplantation genetic diagnosis) was considered to be illegal under the 1990 Embryo Protection Act. After years of increasing calls for the legislator to pass a regulation reflecting scientific progress, PGD was introduced in 2014. Restricted PGD services are now available. Arguably, both laws reflect national attitudes prevalent in Germany to foreclose the possibility of a repetition of past abuses against people with genetic conditions.

Key Concepts

  • Personal genetic data need protection to prevent discrimination based on genetic characteristics.
  • More genetic competences are required by nongenetics medical specialist to safeguard genetic information.
  • Genetic information is considered to be qualitatively different from other medical information by the German legislator.
  • The history of implementing preimplantation genetic diagnosis in Germany illustrates conflicts between laws and scientific progress.
  • Societal and cultural factors are shaping regulatory responses to genetic testing options.

Keywords: legislation of human genetics; genetic counselling; protection of genetic information; individual right to control own genetic data; informed consent; preimplantation genetic diagnosis; genetic exceptionalism

References

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Further Reading

German Ethics Council (2011) Preimplantation Genetic Diagnosis – Opinion, Berlin. http://www.ethikrat.org/files/opinion‐preimplantation‐genetic‐diagnosis.pdf (accessed 27 March 2016).

German Ethics Council (2013) The Future of Genetic Diagnosis – From Research to Clinical Practice –Opinion, Berlin. http://www.ethikrat.org/files/opinion‐the‐future‐of‐genetic‐diagnosis.pdf (accessed 8 October 2016).

Lemmens T, Luther L and Hoy M (2015) Genetic Information Access, a Legal Perspective: A Duty to Know or a Right Not to Know, and a Duty or Option to Warn? Chichester: John Wiley & Sons Ltd. DOI: 10.1002/9780470015902.a0005188.pub2.

Skirton H (2009) Genetic Counselling Services: Outcomes. Chichester: John Wiley & Sons Ltd. DOI: 10.1002/9780470015902.a0005623.pub2.

Soini S (2012) Genetic testing legislation in Western Europe—a fluctuating regulatory target. Community Genetics 3 (2): 143–153. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312949/ (accessed 27 March 2016).

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How to Cite close
Nippert, Irmgard(Dec 2016) Genetics in Contemporary Germany: Regulatory Responses to Genetic Testing Options. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005608.pub2]