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Biobanks
Swiss Academy of Medical Sciences
Swiss Academy of Medical Sciences
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GE Subjects
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e_RL_Biobanken.pdf
Adobe PDF, 120.28 KB
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Abstract
"The obtainment, preservation and utilisation of human biological material for training and research, but also for other purposes, have long been common practice. Important technical innovations, especially in the fields of human genetics and electronic data processing, today make it possible to collect and compare biological material and personal data obtained from it on a large scale. In this way, important new epidemiological, diagnostic and therapeutic knowledge can now be obtained, which was not possible with the research tools available up till now. Biobanks can thus contribute to an important advance in the further development of medical research, particularly in the health-care sector, but also in the whole field of human sciences. While on the one hand biobanks raise justified hopes and expectations, on the other they do involve certain risks and dangers. In particular, there is the fear that biological material and data may be used for purposes other than those for which the donor has explicitly given his1 consent. But even when their use exclusively for research purposes is guaranteed, the problem arises of the possible existence, in the future, of new analytical methods and new objectives, which could not be foreseen by those responsible for the biobanks at the time that the samples and the data were received. The setting-up of more and more extensive biobanks raises ethical and legal problems, which urgently require regulation. On the one hand the rights of the donors have to be protected. In this respect, the right to personal freedom2 and to protection of the individual’s private life 3 are of primary importance. This right also includes decisions regarding physical integrity and the use of personal data, namely the right to self-determination in regard to information. On the other hand, in the interests of the persons directly concerned, but also of society in general, it should be avoided that scientific progress4 and the benefits that it can bring are hindered by excessive regulation."
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Preprint
Date
2006
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With permission of the license/copyright holder