What's the position on data sharing and ethical review processes?
LSE has a process for research "involving human participants, or involving data about directly identifiable human subjects (whether living or recently deceased)" to undergo ethical review. The School gives advice and support to help negotiate this process through the LSE Research ethics policy, procedures and guidance, contacting firstname.lastname@example.org, or by coming to a Data management, data protection, and research ethics surgery.
The School's Research Ethics policy sits in a wider legal, historical, and research regulatory environment. UK specific legal requirements centre round the Data Protection Act 1998 and Freedom of Information Act 2000. Historic influences come from human rights and medicine, including the United Nations Universal Declaration of Human Rights, Declaration of Helsinki , and Nuremberg Code [PDF]. Also be aware of funder policies, like the ESRC Research Ethics Framework, professional association guidance, for example, the Association of Social Anthropologists ethical guidelines [PDF], and some bodies like the NHS that have their own extra ethical review processes. See further guidance for more examples and support.
Using a Data Management Plan to address how consent will be obtained, how data will be anonyomised to prevent identification, how access will be managed through licenses or user agreements, how data will be stored for working purposes and where it will be stored for long-term preservation, will help identify and address areas that could be problematic for ethical review boards. Ethics committees may want personal data identifying respondents destroyed, but there is a difference between personal and research data. By excluding or anonymising identifiable information, or carefully managing access to data, research data can be shared responsibly. Research Ethics Committees should not object to plans for the wider sharing of research data if steps are in place to ensure this.
The Research Ethics Guidebook
American Anthropological Association Statement on Ethnography and Institutional Review Boards
Association of Social Anthropologists ethical guidelines
The British Sociological Association's statement of ethical practice
Framework for Responsible Sharing of Genomic and Health-Related Data
UK Research funders
ESRC framework for Research Ethics
MRC Good Research Practice: Principles and Guidelines
NERC Ethics Policy
BBSRC Safeguarding Good Scientific Practice
EPSRC's Scientific Misconduct Policy
AHRC Data Protection Policy
British Academy Code of Practice for Consideration of Research Proposals
Wellcome Trust Guidelines on Good Research Practice
DFID Ethics Principles for Research and Evaluation
UKRIO Code of Practice for Research: Promoting good practice and preventing misconduct.
RCUK Policy and Guidelines on the Governance of Good Research Conduct
Universities UK Concordat to Support Research Integrity
ONS Protocol on Data Access and Confidentiality
NHS National Research Ethics Service Consent Guidance and Forms
Health and Social Care Information Centre Code of practice on confidential information
Research governance framework for health and social care: second edition
Conducting safe and ethical research with children NSPCC factsheet
Research at National Offender Management Service
Disclosure and Barring Service criminal record checking guidance
Europe and the United States
European Commission Horizon 2020 Grants Manual - Section on: Proposal submission and evaluation pp.15-17
European Research Council Conflict of Interests, Scientific Misconduct and Ethical Issues
European Commission: How to complete your ethics Self-Assessment
European Science Foundation European Code of Conduct for Research Integrity [PDF]
Federal Policy for the Protection of Human Subjects ("Common Rule")
The Belmont Report Ethical Principles and Guidelines for the Protection of Human Subjects of Research
U.S. Department of Health and Human Services Informed Consent
National Institutes of Health HIPAA Privacy Rule
Nuremberg Code [PDF]
WMA Declaration of Helsinki - Ethical Principles for Medical Research Involving Human Subjects
United Nations The Universal Declaration of Human Rights