Press Release 05/2009
German Ethics Council holds forum on issues of personalized medicine
Friedemann Horn, of Leipzig University's Department of Clinical Immunology and Transfusion Medicine, stated in his introductory lecture on the scientific, medical and technical aspects of personalized medicine that therapies were not as effective as they could be because many patients received drugs that were not optimized for them individually. This was. Because seemingly identical disorders sometimes had different molecular characteristics, patients did not always respond in the same way to drugs. The aim of individualized or personalized medicine was to identify such subtypes of diseases, to predict individual responses to therapies and, in the longer term, to develop new individualizable forms of therapy and treatments optimized for a given patient. Another focus was research on the risks of genetic disorders; however, it had been established that complex pathologies were not determined by genetic factors alone. Besides these and other biological parameters, environmental and lifestyle factors also had to be taken into account.
The contribution of Norbert Paul, of Mainz University's Department of the History, Theory and Ethics of Medicine, was devoted to the ethical and social aspects of the subject. He emphasized that although personalized medicine was still in its infancy in terms of clinical applicability, this was not the case as regards the expanded possibilities of obtaining information. Yet the clinical and genome-based identification of the risks of illness not only held out the prospect of a differentiated range of potential therapies, but also raised a number of ethical questions: Did individualization not inevitably involve genetic or biological discrimination? Did it signify increased autonomy or, alternatively, the loss of informational self-determination? Did personalization lead to improved social accessibility of healthcare benefits?
With these questions, Professor Paul led directly into the ensuing panel discussion, in which not only the two speakers took part but also the Cologne journalist Sibylle Herbert and Klaus Lindpaintner, of the Roche Molecular Medicine Laboratories in Basle. The debate was guided by Regine Kollek, a member of the Ethics Council.
Dr Lindpaintner perceived considerable advantages in personalized, or "more precise", medicine, which built on the successes of the existing practice of differential diagnosis. In his view, the only danger was that of the premature introduction of not yet fully developed diagnoses into clinical practice. He also warned against excessive expectations. Personalized medicine dealt with probabilities and not with certainties.
Sibylle Herbert took issue with the fact that, on the one hand, the catchphrase was "individualized medicine", while, on the other, patients in practice learned that they as individuals were less and less significant; on the one hand, enormous benefits were promised, but, on the other, attention was drawn to the limited resources available. A particular problem in her view was that doctors often treated patients in accordance with criteria of utility, and that the decision when a therapy should be included in the list of benefits covered by health insurance schemes often came too late for the patient.
When the discussion was opened to the audience, the main issues raised concerned new challenges to the doctor-patient relationship, such as how patients could be protected by the provision of comprehensive and universally comprehensible information and by informed consent. Another matter considered was the potential for misunderstanding of the term personalized or individualized medicine. As Regine Kollek noted in her closing statement, this showed that science also needed to take responsibility for its choice of paradigms for the propagation of new developments, and that greater reticence was called for in relation to claims of individualization.
An audio recording, the contributors' presentations and a real-time transcription will be available shortly here.