NESSIE | Roundtable 3 | Agenda | Data Protection and Data Access Regulations and Guidelines

Data Protection and Data Access Regulations and Guidelines Radisson SAS Royal Hotel, Bryggen, Bergen, Norway May 7–8, 2004
11.30	Arrival and registration
12.00	Lunch
Knowledge versus Privacy Chair: Bjørn Henrichsen
13.00	Opening address	Marcia Taylor
	introduction	Bjørn Henrichsen
13.30	Ørjar Øyen Most people would agree that every citizen is entitled to be protected by society against violation of integrity. They would also agree that the need for protection of privacy must be balanced against other fundamental democratic rights and values, such as freedom of information and freedom of expression and that legitimate needs of using information exists. This first presentation will focus on the legitimate needs for access to high quality data for research purposes. The emphasis will be on the need for high quality data to perform high quality scientific research, exemplified by data needs and use in specific research areas
External Control and Regulation – The Legal Framework The EC Data Directive – Consequences for Research
14.00	Deryck Beyleveld In October 1995 the European Parliament and Council of the European Union passed the Directive 95/46/EC on the protection of individuals with regard to the processing of personal data and the free movement of such data. The Directive aims to protect privacy and provide an adequate level of pan-European protection.The EU Directive on Data Protection has now been adopted in most member states. Even so, the legal situation across Europe with regard to the use of personal information remains diverse due to varying interpretations of the Directive and consequently, differences in national implementation. Our concern in this context is to assess the balance between the two and sometimes conflicting values of knowledge and privacy in the Data Directive and various national laws and to explore whether the regulation supports or is a barrier to empirical research. Professor Deryck Beyleveld will describe the Data Directive and the main instruments prescribed by the Directive to protect the rights and interests of the individual citizens in relation to processing of personal information. The focus should be on the status of scientific research in the Directive and on how these instruments may advance and/or restrain empirical scientific research.
15.00	Coffee break
Chair: Ekkehardt MochmannResearch Ethics Committees - The State of the Art in Europe
15.30	David Townend Lecturer, Department of Law, University of Sheffield, England Strictly national requirements for prior ethical review of research vary from country to country within the EU, EEA and the NAS. Most countries have set up a national system with research ethics committees responsible for medical and health research. The equivalent system of prior ethical review of research within the economic and social sciences is not very common throughout Europe. There are however efforts in several European countries to assess the need for more regulation or prior reviewing of research within the humanities and the social sciences. Clearly it will be useful to learn from the experience in relation to medical and health research and the development in this field throughout Europe. In this presentation David Townend will give a general view on the development with regard to the creation and legal standing of RECs throughout Europe and describe their responsibility to attend to data protection legislation in the advices/decisions they make regarding approval of research applications.Balancing the Interest in Research against the Interest in Privacy
16.30	Elisabeth Rynning will discuss in more detail how an important requirement of the Data Protection Directive may impose unanticipated dilemmas and consequences for both research and privacy. Professor Elisabeth Rynning will speak about how the principle of balancing of interests proves instrumental to the use of personal data for research, and thus knowledge production in society through application of these rules by supervisory authorities as well as RECs.
17.30	Summing up
19.00	Roundtable Dinner
Saturday, May 8, 2004 The second day of the roundtable will focus on national implementation and practice with regard to EC law and the effect on research.
National Implementation – Consequences for Research
09.00	Mette Hartlev, Department of Law B, University of Copenhagen, Denmark
09.45	Helena Monitz, Biomedical Law Centre, Faculty of Law, University of Coimbra, Portugal
10.30	Coffee break
11.00	Judit Sandor, Central European University, Budapest, Hungary
11.45	Vigdis Kvalheim, Assistant Director, Norwegian Social Science Data Services The purpose of this session is to illustrate and compare domestic implementation of the Data Directive with regard to research. The country reports will emphasise on those aspects of national legislation with particular relevance to the use of personal data for scientific purposes. The presentation should assess compliance with the Data Directive on paper and in practice, and how this affects empirical research. Key concepts are the legal definition of consent, the status of consent in relation to conditions for processing, the duty to inform, public interest and finally forms of regulations such as notification and prior checking.
12.30	Lunch
Managing Data Access and Confidentiality
13.30	Denise Lievesley, Director, UNESCO Institute for Statistics, Montreal, Canada Reducing practical, technical, methodological, economical, and organisational barriers is necessary but not sufficient to ensure access to relevant data for research. However perfect, systems for standardised documentation, search tools and data delivery systems are worthless unless we are able to fill them with content, i.e. high quality data relevant to the research questions raised various scientific fields; be it medical, economic, social or political. At the end of the day confidentiality issues and by extension privacy, turn out to be the most important obstacle to access to rich micro data. To close the meeting we will invite one speaker to describe the situation with regard to access to important data sources, focusing on privacy and legal requirements restricting data dissemination. The presentations should preferably demonstrate how different data producers and countries have chosen various solutions managing data access for research purposes and point towards strategies and models for the future.
14.30	Lessons for the Social Sciences End of Roundtable with Ekkehard Mochmann and Gaston Schaber, NESSIE Partners

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