"A slap in the face". An exploratory study of genetic discrimination in Germany

Abstract

Over the past 20 years, a series of empirical studies in different countries have shown that the increase in genetic knowledge is leading to new forms of exclusion, disadvantaging and stigmatisation. The term "genetic discrimination" has been coined to refer to a (negative) differential treatment of an individual on the basis of what is known or assumed about his or her genetic makeup. Reported incidents² include difficulties in finding or retaining employment, problems with insurance policies and difficulties with adoption.

So far, no empirical data on genetic discrimination in Germany are available. For this reason it remains unclear how often people in Germany are discriminated against because of their genetic characteristics. Aside from individual cases do forms of systematic genetic discrimination exist? If so, in which institutions and social arenas do they appear? These questions cannot be answered at present even cursorily, since no specialised studies or basic surveys have been carried out. Even the ethical, legal, and social issues (ELSI) accompanying the Human Genome Project³ and financed by the German Federal Ministry for Education and Research does not include a single investigation of this.