Individuals’ Involvement in Biobanking: New Ways of Doing Research in Bio-Medicine

Biobanks are repositories, which assemble, store, and manage collections of human specimens and related data. While the collection of samples and data for research purposes has a long history in the educational and medical systems, their recent increase in numbers, size, and importance has focused attention on the changing nature of biomedical research and relationships among investigators, research participants, and the organizations that fund and manage these entities. This surge in numbers coincides with different discoveries and technology improvement and with the vision of improved health through genomic medicine. At the same time, there is an increased need for new solutions in order to translate in health planning programs the results of genomics research findings, for the benefit of the general population. The results of these studies could be of paramount importance for planning effective and qualified interventions for public health priorities, for designing national health strategy and developing preventive medicine interventions. A viable and equitable process of connecting genomics research to public health interventions requires well-established and peculiar ethical standards and research policies. The research performed through biobanks should meet the highest ethical, legal and socially appropriate standards and should also be accompanied by structured policies to guarantee that research findings and results are useful for the greatest public health needs, and that human rights, as well as research ethical standards are respected. In addition to standard ethical issues associated with biomedical research more generally, public health genomics research poses special challenges in different important areas, as anonymization of samples and data, information and consent to the donors, and the return of research results to the donors. Biobanking may represent a unique form of extraordinary platform for innovation in public health and in the production of scientific knowledge, ensuring adequate resources and the ability to combine the different biobanks in national and international networks. The perception of individuals and society in general needs to be educated and strengthened in order to maximize the productivity and the scientific value of biobanks. In this perspective, the harmonization of biobanking is critical to not only to ensure an appropriate use of available resources, but also in obtaining more scientifically valid results.