Ethical Issues of Personalized Medicine and Genetic Information Banks

Biobanks are an essential and important tool of new idea in health system such as Personalized Medicine, genetic epidemiology and screening. Biobanks could investigates the roles, effects and influences of genetic factors and their interaction with environmental factors such as nutrition, stress, etc (in a broad meaning) for the occurrence of behaviors, health conditions, diseases, and quality of life in human populations. Application of biobanks in Personalized Medicine are to understand the influence and impact of genetics parameters on the development of behaviors, health conditions, diseases, and quality of life, their course and the clinical implications, with the final goal to improve prevention, diagnostics and therapy. The unexpected progress of genetics fields in the last two decades - with respect to the understanding of the meaning of genes for human health, as well as the availability of cost-effective high throughput methods in the lab and techniques, has opened massive opportunities to study genetic factors and their influence in human life and health condition. In addition, for establishment of an effective biobank access to large cases and samples of patients or from the population is needed. This can be realized via collaboration of several biobanks. Large biobanks with 500,000 or more participants are being established or planned in the UK, Japan, Iceland, Taiwan, Canada, Australia, Italia, Sweden and the US. However, in Germany only two smaller activities are ongoing, KORA-gen in the south and POPGEN in the north. Possibilities to reach larger numbers for Germany, based on existing cohorts or disease networks, are discussed between scientist and government. For the implementation and use of biobanks, stringent ethical, social and legal boundary circumstances have to be taken into account. The opinion of the German National Ethics Council on Biobanks for Research as well as the new advices of the Telematic Platform (TMF), which has been developed in close collaboration with the Data Protection Officers, improve transparency and legal security.

کلیدواژه ها:

Biobank ، Personalized Medicine ، Ethics issue ، Privacy Policy ، Genetic privacy