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6 Stud. Ethics L. & Tech. 1 (2012)

handle is hein.journals/selt6 and id is 1 raw text is: Corradetti et al.: Patientcentricity: An Editorial Editors' Note On 12 March 2009 Time dedicated an entire issue indicating the top ten world- changing ideas for the next future and among these a special attention was dedicated to biobanks. The article asks a very important and challenging question: are there benefits that can be reasonably expected from very costly biomaterial storage and - if yes - which kind of benefits are these? What is insisted upon is the identification of the following burning ethical issue: privacy and security of data. It seems though that within Time's article many distinct issues are conflated into one. The role of research biobanks appears to be unclear and undefined to the extent that research and therapy measures are confused in a general promise for results, while they are in the real world kept very well distinguished. Furthermore, while it is of great value to point out the potential benefits of research biobanks, one should not underestimate the extremely complex ethical, legal and governance implications of tissue storage which accordingly cannot in any case be exhausted simply by referring to the category of privacy. In the last 10 years the literature on biobank ethics has referred to participants in research as passive objects that, in the best option, should be protected through privacy measures. At the same way ethics has been often regarded as nothing more than a burden for research. This special Issue tries to overcome this narrow view and to provide a setting in which emerging issues of social and ethical knowledge could be discussed in depth. In this arena we found an ongoing twist in the current ethical path in which patients can be regarded as active agents around which research can do better and in which ethics can indeed help not only in performing correct science but in delivering more efficient and trustful results. So, just to use a metaphor, if the bio-specimens are the deposits in the bank and the expected benefits range from general knowledge to advancements in research (and therefore, in a nonlinear suggestion, treatments for world-wide diseases as Alzheimer, diabetes and even cancer) one might wonder what are the shares of the participants/shareholders and what is the insurance that the deposited value is used in the best interest of them? Further it might be asked how could someone that carries a great interest in maximizing her interest contribute more to research? The need of deepening these social and ethical aspects related to the biobank enterprise lead to the organization of the conference on patientcentricity. The conference took place in Rome on 28-29 September 2011 and it was organized by the Center of Biomedicine of the European Academy of Bolzano thanks to the financial support of the Italian Ministry of University and Research. Published by De Gruyter, 2012 1

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