Genetic Discrimination in Germany

An investigation into experiences of unfair and adverse treatment due to risks of genetic diseases

Over the past 20 years, a series of empirical studies in USA, the United Kingdom and Australia, have shown that the increase in genetic knowledge is leading to new forms of exclusion, disadvantaging and stigmatization. The term "genetic discrimination" has been coined to refer to unfair and adverse treatment of an individual on the basis of what is known or assumed about his or her genetic makeup. Reported incidents 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 frequently people in Germany experience these and other forms of unequal treatment and discrimination.

Our comprehensive empirical study is intended to close this gap in the research. It will investigate the experiences of people who have suffered discrimination because of a (presumed) predisposition to a genetic disease. Attention centres on the following questions: Are there any indications for unfair treatment and exclusion due to genetic traits? What forms of unfair treatment exist? In which fields do unfair treatment and exclusion occur and how do the affected parties cope with this?

Design of the investigation

The investigation starts from the assumption that, in principle, four groups of people are affected by genetic discrimination:

1. people who have an unusual result from an examination for an autosomal-dominant disease, which means there is a high probability that they will suffer from this disease;
2. people in whom a genetic predisposition to a disease has been detected from which they may but will not definitely suffer in the future;
3. people with completely treatable genetic diseases;
4. heterozygous "carriers" of recessive traits which do not lead to illness in the carriers themselves but may do so in their children.

We have selected four conditions as examples; they are intended to represent the different means of hereditary transmission, symptoms and genetic characteristics as well as the accompanying experiences of illness:

1. Familial Adenomatous Polyposis (FAP),
2. Hereditary Breast and Ovarian Cancer (BRCA1/BRCA2),
3. Iron Overload Disorder (Hereditary Haemochromatosis, HH),
4. Cystic Fibrosis (CF/Mucoviscidosis).

The project aims to

• analyze the effects of genetic discrimination on individuals and their families

and

• describe how the affected parties try to minimize and cope with the risk of genetic discrimination.

Investigative steps

In the first project phase, a questionnaire-based survey is being conducted among relevant support groups and selected genetic advice centres. This is intended to facilitate insight into the forms and dimensions of genetic discrimination.

Following on from this, the second project phase will comprise approximately 60 semi-structured interviews conducted with the aim of supplying information on experiences and ways of coping with practices of genetic discrimination.

To develop, extend and consolidate the acquired information, the third project phase plans to conduct three to five interviews with family members, employees or representatives of insurance companies for each of the diseases named above.

The research is part of a combined project involving the Faculty of Social Sciences at the Goethe University Frankfurt and the Department of Humanities and Social Sciences at Helmut Schmidt University/University of the Federal Armed Forces Hamburg. It is being financed by the Federal German Ministry of Education and Research (BMBF) within the priority programme entitled "Ethische, rechtliche und soziale Aspekte der modernen Lebenswissenschaften und der Biotechnologie" [Ethical, legal and social aspects of modern life sciences and biotechnology] under the funding code 01GP1009B.

http://www.genetischediskriminierung.de/project_gb.html