Research into the human genome and novel diagnostic procedures for the first time offer the possibility to diagnose genetic disposition of diseases before their onset.
The Deutsche Forschungsgemeinschaft Senate Commission on Genetic Research looked into this aspect of human genome research and now addresses the public with the statement "Human Genome Research and Predictive Genetic Diagnosis: Possibilities - Limitations - Consequences." In this statement, the commission deals with a variety of ethical, legal, and social questions arising from handling this novel genetic knowledge.
Research into the human genome is of particular importance for understanding disease causes, the assessment of disease risks, and for the development of novel therapies. The predictive genetic diagnosis that results from human genome research differs from diagnostic procedures commonly used in medicine for clarifying manifest diseases. Such predictive tests will not be capable of decide if a disease will actually become manifest or if so at which time - many years or even decades can lie between the test result and the first signs of a disease.
Moreover, to date, causal treatments for the majority of genetic diseases are not yet available. Rapid developments predominantly in chip technology are making it possible to develop novel and relatively easy test systems for the simultaneous detection of many genes. This would enable tests to be performed on a large scale although there might not be any medical reason to do so. For society and for the individual these developments will have considerable consequences. Apart from diagnosis and therapy of genetic diseases, there will be far- reaching consequences for insurance matters and the employment market.
The Senate Commission recommends that handling of predictive genetic diagnosis
be
restricted rigidly to health matters such that tests can be performed only with
a medically
justified goal of establishing
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Contact: Dr. Pia Teufel
pia.teufel@dfg.de
49-228-885-2376
Deutsche Forschungsgemeinschaft
15-Jul-1999