Last week Thursday and Friday the ESRC and UK Data Services ran a workshop on “supporting human rights organizations to deliver insight from data”. Attendees for this workshop consisted of a mix of human rights organizations [Save the Children, Advocates for International Development, Fair Trials, the Ariadne network (European funders for social change and human rights), Housing Association Charitable Trust, the British Institute of Human Rights, Medaille trust, Freedom from Torture] and organizations or university researchers with relevant expertise in data management and/or analysis [UK Data Service, Surrey University, New Philanthropy Capital, The Times, The Guardian, the GESIS-Leibniz Institute for Social Sciences, King’s College London, DataKind UK, University of Manchester, COSMOS, CaSMa].
Through a series of presentations, case studies and discussions we gained a better understanding of the specific challenges faced by human rights organizations, ranging from financial constraints of the not-for-profit sector, to concerns about privacy and anonymization to protect vulnerable people, and the ethical need to guard against possible negative consequences that predictions from data modelling might have for certain population groups.
A large, and important, part of the workshop focused on the services that the UK Data Services/Archive provides to help academic and non-academics who need access and/or storage of social science types of data. To quote the UK Data Service website: ”The UK Data Service is a comprehensive resource funded by the ESRC to support researchers, teachers and policymakers who depend on high-quality social and economic data.” The Data Archive side of the service provides access to “a wide range of secondary data including large-scale government surveys, international macrodata, business microdata, qualitative studies and census data from 1971 to 2011”. The Data Service side provides “extensive support, training and guidance to meet the needs of data users, owners and creators”. As a central hub for much of the ESRC efforts towards Open Data, the UK Data Service promotes “data sharing to encourage the reuse of data, and provide expertise in developing best practice for research data management”.
- National statistical authorities – Office for National Statistics (ONS), National Records of Scotland, Northern Ireland Statistics and Research Agency
- UK government departments – including the Home Office, Department for Business, Innovation and Skills (BIS) and Department for Work and Pensions (DWP)
- Intergovernmental organisations – including the International Monetary Fund (IMF), Office for Economic Cooperation and Development (OECD), and the World Bank
- Research institutes – including NatCen, Institute for Social and Economic Research and Centre for Longitudinal Studies
- Individual researchers
Other contributors include:
- Economic and Social Research Council (ESRC) provides the funds necessary to prepare, preserve and provide access to data and resources
- National Centre for Research Methods (NCRM) provides a portfolio of training in secondary data analysis
- ESRC Doctoral Training Centres provide structured training for postgraduate researchers
An important link to CaSMa’s mission is provided by the Data Management support that is offered by the UK Data Services, especially their support on legal and ethical issues.
To quote their website: “Much research data – even sensitive data – can be shared ethically and legally if researchers employ strategies of informed consent, anonymisation and controlling access to data.
Legal issues: Researchers obtaining data from people are expected to maintain high ethical standards and comply with relevant legislation. Ethical guidance is provided by professional bodies, host institutions and funding organisations.
Consent for data sharing: Informed consent is an ethical requirement for most research. It must be considered and implemented throughout the research lifecycle, from planning to publication, and should include making provisions for sharing and future use of data.
Anonymisation: Before data obtained from research with people can be shared with other researchers – either archived or published – data may need to be anonymised so that individuals, organisations or businesses cannot be identified.
Access control: Sensitive and confidential data may be safeguarded effectively by regulating or controlling access to data or use of them. As well as securely storing such data, such safeguards enable data to be shared with others for research and educational purposes.
Resources: Ethical guidelines for research are issued by professional bodies, host institutions and funding organisations. We have collated a number of useful resources on research ethics, consent and anonymisation.”