NeIC 2015 bioethics workshop
Nordic Bioethics Committee: Confidential Medical Information – Ethical and legal perspectives
Morning session organized by Nordic Committee on Bioethics (NCBio)
Organizer: Janne Nikkinen, NcBio
Reporting: Janne Nikkinen
Theme: Data sharing and sensitivity in the medical context.
Links
Abstract
The handling, security and use of data have become more important than ever due to implementation of internet and new technologies. Reports of identity theft and leaking of sensitive information are commonly discussed in the context of private businesses. However, it is important to discuss the role and ethics of data accumulation and sharing also in the public sector. For example, in 2004 U.S. FDA approved chip for storing medical information within a human body (VeriChip). Similarly, genotyping of humans is nowadays prevalent in medical research. Still, many questions about the storing and sharing of the data remain either unresolved or unrecognized, even by those conducting the research.
In 2012, the European Committee of Ethics and Emerging Technologies (EGE) published a report about ICT-ethics, in which it paid attention to issues related to sensitive data and its usage in the public realm on the level of European Union. This session is organized to raise awareness about the ethical and legal issues in relation to sensitive data storing/sharing especially in the Nordic countries. The issues include informed consent of the citizens, controlling access to data in public institutions, and working with research ethics committees, to ensure that all parties have their say in the process.
The target audiences for this event are both practitioners and public officials who are involved in shaping the relevant laws, regulations and policies mainly in relation to storing sensitive medical information. We focus on who will have access to sensitive medical data (occupational health care, other public and private health care operators), what kind of information is stored, in which kind of context it is used, etc. It may well be the case that data contains information that is either inconvenient for persons themselves, or can be used in assistance of health care rationing and resource allocation. Furthermore, it is important to discuss the ways how data is disseminated among the parties conducting the research (especially in the case the research is multi-centered, having also commercial interests).
Agenda
Please note that this agenda is preliminary.
| Time | Topic |
|---|---|
| 08.00 - 09.00 | Registration and coffee |
| 09.00 - 09.10 | Welcome by Chair, Nordic Committee on Bioethics |
| Nature of issues Moderator: Janne Nikkinen | |
| 09.10 - 09.40 | "Genetic information and research: Questions and concerns" (working title) Linda Laatikainen, the Finnish Institute for Molecular Research |
| 09.40 - 10.10 | "Public health and processing of personal medical information" (working title) Gun Peggy Knudsen, Norwegian Institute of Public Health |
| 10.10 - 10.40 | iHealth and the digitalization of a health system Kristian Hveem, Statens Serum Institut, Denmark |
| 10.40 - 11.00 | Break |
| Legal, philosophical and ethical perspectives Moderator: NcBio board member (Gunhild Isfeld or Arnar Palsson) | |
| 11.00 - 11.20 | Privacy as an ethical and philosophical challenge Salvor Nordal, Director of Center for Ethics in the University of Iceland |
| 11.20 - 11.40 | Philosophical perspectives Thomas Ploug, Dpt of Communication, U. Århus, Denmark |
| 11.40 - 12.00 | Legal issues related to sharing sensitive data Hordur Helgi Helgason, Icelandic Data Protection Authority |
Presentations
TBD