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WS: Bioethics

Janne Nikkinen
Session chairJanne Nikkinen
TrackWS Track 4
DateWednesday, 6 May 2015
Time09:00 - 10:30
DescriptionPresentations will be made available at this url:

http://neic2015.nordforsk.org/display/NeIC2015/Bioethics

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

9.00 - 09.10   Welcome by Chair, Nordic Committee on Bioethics

Nature of issues
Moderator: Gunhild Isfeld

09.10 - 09.40   Genetic information and research: Questions, concerns and lessons learnt
Linda Laatikainen, the Finnish Institute for Molecular Research

09.40 - 10.10   Using sensitive data in population based health research: A researcher's perspective
Gun Peggy Knudsen, Norwegian Institute of Public Health

10.10 - 10.40   Dynamic communication with the donor population - ethical, legal and technical perspectives
Kristian Hveem, Norwegian University of Science and Technology

Break

Legal, philosophical and ethical perspectives
Moderator; Arnar Palsson

11.00 - 11.20   Privacy as an ethical and philosophical challenge
Salvor Nordal, Center for Ethics in the University of Iceland

11.20 - 11.40   Philosophical perspectives
Thomas Ploug, University of Århus

11.40 - 12.00   The Silent Revolution: How Iceland quietely moved from time-limits and consent, for confidential medical data research, to permanent storage and subsequent use without consent
Hörður Helgi Helgason, Partner, Landslög Law Offices, Iceland