Teacher protests at gene bias
A teacher in Germany who applied for a permanent job with the regional school authorities in Hesse has been turned down because her father has Huntington's chorea.
The teacher said on her application form that her father suffers from the disease, which is hereditary and affects 50 per cent of sufferers'
children. The neurological disorder usually leads to death 15 to 20 years after the onset of symptoms.
The school health authorities then informed the 35-year old that her application had been refused as she herself was likely to show symptoms within the next 10 years and it was therefore unlikely she would be able to work until the age of 65.
She has now lodged an appeal.
"This is blatant discrimination on genetic grounds," says defence lawyer Gerd Hauptmanns who is representing the teacher in the impending dispute.
"It is a serious breach of data protection where a person's fate depends on the health records of third parties."
All teachers in Germany are entitled to apply for permanent posts after three years in the profession which, if granted, confer full civil servant status.
Lavish benefits then include lifelong job security with comprehensive old-age and health insurance at no cost, since Germany's civil servants only pay tax. Early retirement for health reasons, irrespective of how young people are, carries 95 per cent full pay.
The case underlines the need for federal legislation to protect those at risk of hereditary diseases.
At present, government bodies as well as health authorities and insurance companies can access people's private records when processing applications.
Victims have no legal redress, although a draft bill banning such access has been submitted to the federal health minister and could become law by early next year.
"Naturally, insurance companies want to know about prospective policyholders' health," says Christiane Lohkamp, chair of Germany's Huntington's Chorea Aid Association. "Employers want to know if it's worth investing in potential employees." But when the state starts screening people too, she feels, there is cause for concern.
Mrs Lohkamp, whose own husband died of Huntington's chorea and whose daughter is also affected, has been monitoring discrimination involving the disease for years. Her records contain many cases involving policemen, another profession in Germany whose members can become civil servants. Mrs Lohkamp's evidence shows that they have difficulty getting permanent jobs if families have a history of hereditary disease.
These people are then often under discreet pressure to take a genes test to try and secure a clean bill of health. However, such screening is highly controversial since those who test positive are presumably then subject to immense psychological strain.
"We need firm legislation so that people are not forced to take tests and companies are banned from accessing unauthorised data," concludes Christiane Lohkamp.