Science and public – a necessary discourse

The questions "What is possible in science at the present time?", "What are the consequences of science?", and "What is science allowed to do?" are asked nowadays even more urgently than ever.

The new possibilities of basic research in the biological sciences and biotechnological applications derived from the insights of genome research and gene technology provide new chances worldwide for sustainable improvement of our living conditions and our economic strength. They engender hope but also fears, because they open up novel and up to now unimaginable opportunities to influence the mechanisms of life. They lead to new questions and intensive public debates about the limits of research.

Science and the public are in complete agreement that life science research contributes significantly to understanding diseases and to developing possibilities for therapy and sustainable production. On the other hand, there is awareness that with the rapid growth of new knowledge and methods, the possibilities for an abuse increase as well. The risks seem to be especially threatening when the scientific facts are complex and difficult to understand. Many people feel insufficiently informed to rate the goals, approaches, and consequences of genome research.
It is therefore necessary that scientists inform the public about what they are doing and what their goals are in an easy-to-understand fashion. At the same time, the scientists will see their work questioned in another way by interested citizens. A broad but fair debate throughout society is needed.

The legal framework must ensure that citizens on the one hand can profit from the chances of genome research and gene technology – such as in the cure of diseases – and on the other hand are protected from the possibilities of abuse, such as unauthorized circulation of patients’ confidential genetic data. Here, however, it must be assured that the measures protect the citizens and also grant scientists fundamental freedom to research.

To ensure a factual and differentiated view of genome research, the German Federal Government has initiated different arrangements. The German Federal Ministry of Education and Research (BMBF) fosters research projects concerning ethical, legal, and social aspects in the biosciences. They are an integral part of the work of the National Genome Research Network (NGFN), and can be taken into consideration in the disease-related genome research. These measures are complemented by discourse projects. Of special significance was the "Year of the Life Sciences", which the BMBF and the top scientific associations organized in 2001. A sustained broadening of the bioethical expertise in Germany shall be achieved with new actions for young academics.

Furthermore, the Federal Government supports the establishment of the German Reference Center for Ethics in the Biosciences (DRZE) as an infrastructure institute. The DRZE collects and documents bioethical publications and makes them available to the public. Since its establishment in 1999 it has established itself as an important scientific institution both on the national and international level.

Moreover, the Federal Government established the National Ethic Council in June 2001. It includes in the debate scientific experts and politicians, experts in philosophy, theology, law and social sciences, as well as representatives of important societal groups, such as patient associations, employer associations, unions and the churches, in order to ensure a mixture of different ethical aspects and a broad range of opinions. The Council comments on ethical issues of life sciences and their consequences for the individual and society and develops recommendations for politics.
In summer 2007, the work of the national bioethical advisory board got a legal basis by the new Ethic Council Law coming into effect. The National Ethic Council was renamed to German Ethic Council. The German Ethic Council establishes an independent and permanent advisory board in life sciences and adjacent disciplines and their applications, that gives advise to the German federal parliament as well as to the federal Government and provides access to interdisciplinary expertise.

Given the current developments in human genome research, the German federal parliament legislated the Gene Diagnostics Law on April 24th of 2009, in order to restore the informal right of self-determination on gene diagnostic tests, to protect against the possibilities of abuse and to preserve the chances that genetic investigations offer to the citizens. The law is obliging the demands of a good genetic research procedure.

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