Acceso usuarios
Hans Christian Wilms
The ethical and legal challenges of biomedical research are among the most crucial and interesting questions in law nowadays. One of these questions concerns the regulation of research on human genetic data in transnational constellations. Genetic research promises therapies and prevention for diseases like cancer and HIV, but it is highly dependent on genetic material derived from donors of tissue or blood. For significant advancements in cancer research, for instance, a large number of genetic data of patients is needed. Such data are most effectively collected in and made available by databases or biobanks that allow the exchange of genetic data by various research facilities. To enhance the possibilities and enlarge the amount of genetic data available for researchers the European Union through its 6th Framework Programme of the European Commission under the Action Line �Integrated biomedical information for better health� funded the so-called �Advancing Clinico-Genomic Trials on Cancer� research project (ACGT). This project aimed to deliver to the cancer research community an integrated clinico-genomic information and communication technology environment designed to become a pan-European voluntary network connecting individuals and institutions to enable the sharing of data and tools. However, broadening the scope to the European level causes problems of integration of different national views on ethical issues and their legal framework.
The book under review presents some of the findings of the ethical and legal section of the project. The authors, specialists in the field of data protection, data security, and technology assessment, scrutinized the necessary framework for a pan-European infrastructure for medical researchers aiming at a bigger pool of genetic material for research on various types of cancer. Recognizing the necessary link between law and ethics in the realm of biomedical research, the authors combined both of these aspects to provide a holistic socio-scientific analysis of the project, �
