Ethics Council Warns Against Gene Testing

Germany's National Ethics Council, which advises the government on ethical questions of modern medicine, recommended Tuesday that forcible gene testing in the workplace for hereditary diseases should be subject to strict restrictions under German law. It did, however, concede that exceptions could be made if third parties might be at risk -- in the case of pilots, for example.

An urgent need for legislation

Some one hundred thousand gene tests are carried out in Germany every year -- many of them ordered by employers seeking to check on the long-term health risks of people applying for jobs.

Germany's National Ethics Council believes that legislation protecting workers and employees is urgently needed to avoid misuse of data gathered from these tests.

Jochen Taupitz, a legal advisor on the panel, believes that existing German regulations are lagging far behind the rapid advances in gene technology.

"There is no law in Germany governing the use of these tests in a detailed manner," he said. "All jurisdiction made by German courts so far is rather vague and does not match the technological progress in this field."

Restrictions

In Germany, forcible gene tests made the headlines after a young teacher was refused employment two years ago for failing to undergo a test of her genes. When school authorities learned that the applicant had a family record of Huntington's disease, a hereditary disease that affects the human nervous system, they wanted to find out whether she could also develop the illness. A court ruled in the woman's favor.

Kristiane Weber-Hassemer is the head of the German Ethics Council. "We have come to agree that restrictions must be imposed here," she said. "This is especially needed to protect employees against dismissal for medical reasons. Restrictions must be put on the period of validity of gene diagnoses and predictions about the chances that a disease might occur."

5-year diagnostic validity

The scientists are demanding that the diagnostic validity of a gene test should not go beyond 5 years and that test results must be labeled negative if the possibility of an outbreak of a specific disease is estimated at less than 50 percent.

Efforts by Chancellor Schröder's center-left government to adopt new gene laws have been halted until after early elections in Germany in September this year.

The recommendations made by the Ethics Council Tuesday, however, don't affect other areas of public life -- including possible gene screening by insurance companies. In this area, German companies have voluntarily imposed a moratorium banning such testing of insurance applicants until 2011. But the experts on the Ethics Council believe that strong regulations will then be needed more urgently than ever.