Large databases of medical records and biobanks of genetic (and other) information are by now a common feature of health care and research systems in many countries. Traditionally the clinical, research and public health approaches to the uses of such data have been distinct. But increasingly it is impossible to draw such boundaries between clinical, research and public health needs and purposes.
Tissue banks in hospitals collected for clinical purposes are made available for research, e-health databases for medical records are set up with the hope that they will be beneficial not only for individual diagnosis and treatment but also for social uses - research, quality control, and planning of healthcare provision. Genetic database projects are moving towards supporting the idea that feedback should be given to participants.
At the conference these different individual and social uses will be brought into focus and the increasingly dynamic boundary between clinical use, research and public health will be investigated.
Our conference aims to study the implications of these developments and reflect upon possible answers to the following questions:
• Is it possible, or indeed desirable, to hold on to the separate ethical frameworks for the distinct uses of databases and biobanks? Why/not?
• Is there a need for the reconciliation between the universalistic principles of medical ethics and the context-sensitive approaches to bioethics in relation to biobanks and other databases?
• What has happened to the traditional boundary between individual vs social purposes of databases?
• How are the inevitably conflicting values (e.g privacy, autonomy, solidarity) to be reconciled in these debates?
• What are the reasons for providing feedback? What interests are at stake? Is it reasonable to defend a moral right not to know? Who should decide whether feedback is given? What is valuable information and what is the best way of communicating it?
Please register before October 27, 2012. Participation is free of charge. Working language: english. https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=...