Stakeholders meeting. Ethical protocols and standards for research in Social Sciences today

Transcription

1 Stakeholders meeting organised by the Scientific Committee for the Social Sciences Ethical protocols and standards for research in Social Sciences today Date: Thursday 11 June 2015, from to Location: Thon Hotel EU, Rue de la Loi/Wetstraat 75, B 1040 Brussels. 10:00 Registration & Coffee 10:30 Welcome by Chair Scientific Committee for the Social Sciences The Chair, professor Thomas Risse, welcomes the participants. He will sketch the background of this meeting in the context of the Committee s overall activities. Introduction by Science Europe (SE) Science Europe will highlight the present meeting as a step in the interaction between Scientific Committees and Member Organisations. 10:40 Introduction by the Organizers: Jane Falkingham Dean for the Faculty of Social and Human Sciences, Southampton University Including: Outlining the issue (cf. Background above) Aim of the meeting (cf. above) Tour de table Questions & Discussion Participants present their background and interests in the workshop. Questions and point of discussion from the participants perspective. The aim of the workshop is to have a strong interaction among the diverse group of participants Focus: What is the discussion in different countries and what are the real obstacles in developing the debate on ethics further? What would you need from the other participants? (open questions you may have, difficulties encountered by your organisation that you would like advice on, discussion on next steps that the group could undertake jointly, etc). How can the conclusions of the workshop support their own work in national constituencies? Coffee break Presentations Eight lessons learnt from 8 years of Ethics Review of EU funded projects I. Karatzas, Head of Sector Ethics and Research Integrity (DGResearch) Research Ethics in addition to setting the framework of safeguarding

2 fundamental rights, including those of the researchers themselves, sometimes can improve the research results. In the context of Horizon 2020, ethics appraisal should be seen only as a constituent (but important) part of the complete process of embedding ethics in research design, implementation and dissemination. DG RTD has been involved in the structured ethics appraisal of social sciences research and in training and awareness activities geared towards the research community and research managers for at least 8 years. While the issues that social sciences research brings to the research ethics discussions are not new, the social sciences context is relatively new, at least as far as compliance to ethical standards and related legislation is concerned. At both the international and national levels support structures and commonly accepted principles and guidelines (dedicated to each specific research field) for the ethics appraisal of social sciences are missing thus creating uncertainties on the remit of ethics panels and generating avoidable conflicts between the research community, funders and policy makers. While herculean, the task of supporting the social sciences research community to embed ethics in their research protocols must continue through a number of actions. Independently of the sources of funding, a major challenge is to change the misplaced perception that ethics is a red tape mechanism, to ethics as an enabler of robust research Case studies: the researchers perspective Lunch Case study on The Superidentity Project Dr Sarah Stevenage, Senior Lecturer of Psychology and Associate Dean (Education) for the Faculty of Social and Human Sciences, Southampton University The SuperIdentity Project was funded through the EPSRC and represented a multidisciplinary approach towards an understanding of modern identity. It recognised that identity exists as much online as offline. Consequently, the SuperIdentity Project had two goals. The first was to identify a set of reliable identity cues both online and offline that could be used as means of identification. The second was to determine any links between these cues so that the knowledge of one piece of information may enable the prediction of another previously unknown piece of information. Within the Project, a substantial dataset was gathered to enable investigation of the reliability of individual cues, and the linkage across cues. Whilst our intention had been to release this anonymised dataset to the academic community, in line with the UK research councils data policy and whilst participants had indicated their informed consent for such a release at the time, the potential risks of re identification through data linkage meant that the project faced an ethical tension between the normative expectations of ethically approved funded research and our obligation to our research subjects to prevent harm in the short and long term. 13:50 The coming birth of a streamlined ethics process in social sciences research Marie Marie Sophie Peyre, Scientific advisor for ethical issues at the ERC

3 Research in social sciences is presently in the same situation as was research in life sciences a few years ago in terms of dealing with ethics. Funding institutions are raising the level of their requirements but the process is not yet streamlined and researchers often struggle to provide answers as they are not used to dealing with it. Universities and host institutions have not yet put in place the adequate structures in order to help the researchers answering those questions such as Ethics Committees with a competency in social sciences, data protection officers. The problems are often acute when dealing several issues such as non EU countries or projects using technologies traditionally involved in life sciences. It is also the case with projects dealing with personal data, as data protection laws are technical and evolve at fast pace, which often leaves researchers puzzled on how to answer to the requirements linked to this topic Administrative Data Research Network A service for researchers: A solution to manage ethical risks Prof David Martin Deputy director of ADRN The UK s Economic and Social Research Council (ESRC) has established an Administrative Data Research Network (ADRN, in 2013 to provide a coordinated physical infrastructure and procedural framework to facilitate the sharing of de identified linked government administrative data for social science research. Legal gateways for the sharing of de identified data for research already existed, but the absence of any coordinated infrastructure has been a barrier to researcher access. The ADRN comprises four national research centres and a central coordinating service. Researchers are able to apply to the coordinating service for support for specific research projects. The network encompasses harmonised procedures for obtaining ethical, legal and scientific feasibility approval and for centralized negotiation with data owners. Once a project is approved, trusted data linkage partners receive and link de identified datasets which are then made available to trained and accredited researchers within a network of secure laboratories. No data may be removed from the secure laboratories and all research outputs are subject to disclosure control mechanisms and vetted before being released from the secure environments and the linked data are destroyed at the end of the project. The network is currently in its first year of full operation and this presentation will describe the progress so far and outline some of the challenges Break out sessions Moving forward Session 1: roles and responsibilities fit for purpose? What is the current state of the art in terms of practice? How good is it? Would you feel comfortable with the mechanisms for addressing the problems raised in the morning sessions? Facilitator: Jane Falkingham SE Social Sciences committee member Session 2: recommendations towards good practice as a route to determining principles for future endorsement. Facilitator: Dr Edgar Whitley Associate Professor in Information Systems, LSE These sessions will see two groups with a mix of experience to discuss issues of

4 governance and principles of best practice. The session will focus on identifying ethical tensions and on how to increase awareness of them so that actions to mitigate them take place. The aim is to have an interaction of experiences to address the next step in the discussion Coffee break 16:00 Conclusions & Next steps The organisation team will summarize the outcomes of the discussion with a view on next steps. At the same time, will suggest identified and agreed concrete recommendations, as a community of researchers, policy makers and funders, to ensure a framework of good practice across the range of social science methodologies. 17:00 Drinks & Networking Opportunity Dinner El Turco Rue Du Trone, 73/Place De Londres, 6 Bruxelles, 1050, Belgium

5 Stakeholders meeting organised by the Scientific Committee for the Social Sciences Ethical protocols and standards for research in Social Sciences today Date: Thursday 11 June 2015, from to Location: Thon Hotel EU, Rue de la Loi/Wetstraat 75, B 1040 Brussels. Synopsis: The global scientific community faces a challenge: Whilst computing technologies enable the analysis of big data to inform powerful investigations, issues of data sharing, combination and linkage raise ethical dilemmas surrounding risk, consent and privacy. This meeting will draw together experts across funding bodies, policy makers and academia to debate a way forwards that enables a robust science whilst respecting privacy. Target audience: The invitation is addressed to the Science Europe member organisations and, in particular, to the representatives of the Social Sciences/SSH scientific departments and divisions. The workshop is also of interest for those managers who are engaged with ethical issues across disciplinary boundaries, to share their competence in terms of existing protocols and to help develop the discussions. The Context: Analysis of big datasets has enabled a paradigm shift in the academic community. Data can now be combined across studies enabling powerful research questions to be addressed, and providing scientific advancement which has rigour and translation across global communities. Benefits are clear in advertising and actuarial domains where awareness of user preferences or lifestyle changes may benefit business. Benefits are also clear in the domain of medicine where better data can underpin more rigorous science in areas such as child mortality, infectious disease, and chronic health conditions. The ESRC Digital Curation Centre has reviewed its data management framework recently, and the newly named Digital Curation Centres support data sharing for research, including replication. In addition, the confirmation that the UK Census will draw on administrative data from 2011, and the establishment of the ESRC backed Administrative Data Research Centres (ADRCs), signals clear commitment to the support of big data research within academic domains. Simultaneously, the legal field has debated actively on issues of information privacy and data management. The Right to be Forgotten, now termed the Right to Erasure (Article 17 of EU Data Protection Regulation) stresses that individuals are the owners of their data and as such should have the right to control dissemination of data. In particular, they should have the right to deletion of old data (erasure) in the interests of reasonable privacy. Exceptions may however,

6 exist in the interests of public interest, public health, and scientific research, and herein lies the heart of our debate around data sharing. The Problem: The issue we face is that despite all currently available methods of anonymisation in line with ethical standards of data management, the technologies may exist, or may come to exist, by which disparate aspects of data related to a single person may be linked and combined in a way that was not consented to at the time of collection. Issues of informed consent, and dynamic informed consent require renewed consideration, and issues of data sharing and data management require reform. The Goal: Our forthcoming meeting will draw together leading academics, funders and policy makers with a view to debating the issues and collaboratively setting a direction to guide the research communities. Paramount will be the exploration of the schism between privacy on the one hand, and data sharing for robust research on the other hand. Substantial impact will be achieved through debate that underpins the development of good practice guidelines for the research community in this area. Given recent UK and EU reforms, this debate is both urgent and timely. It is required if publically funded academic research is to truly serve the interests of the public. More fundamentally, this debate represents our commitment to act on our responsibility to ask not just what we can do but what we should do when it comes to privacy and data sharing.