Research Ethics are a vital part of any research undertaking intended to safeguard the dignity, safety and welfare of prospective human participants, animals, communities, institutions and environments.
“Informed consent is an ethical requirement for most research and must be considered and implemented throughout the research lifecycle, from planning to publication. Gaining consent must include making provision for sharing data and take into account any immediate or future uses of data…. Contrary to what some researchers or research participants believe, even sensitive materials can be shared ethically. At a minimum consent forms should not preclude data sharing, such as promising to destroy data unnecessarily.” See more at UK Data Archive
Core principles:
The Australian National Data Service (ANDS) has made available a useful decision tree on publishing and sharing sensitive data. Their website also contains a lot of useful information, including a guide and presentation.
“Before data obtained from research with people can be shared with other researchers or archived, you may need to anonymise them so that individuals, organisations or businesses cannot be identified… Re-users of data have the same legal and ethical obligation to NOT disclose confidential information as primary users. ” See more at UK Data Archive.
Procedures to anonymise data should always be considered alongside obtaining informed consent for data sharing or imposing access restrictions.
A person's identity can be disclosed from:
Anonymising research data can be time consuming and therefore costly. Early planning can help reduce the costs.
For more information and guidance on both quantitative and qualitative anonymisation please refer to:
UK Anonymisation Network: offers practical advice and information to anyone who handles personal data and needs to share it.
Finnish Social Science Data Archive
Inter-University Consortium for Political and Social Research (ICPSR) QualAnon qualitative anonymisation tool
Anonymisation case studies, techniques and guidance from The UK Information Commissioner's Office's Anonymisation Code of Practice (November, 2012)
UK Anonymisation Network (UKAN) resources
General Medical Council (GMC). (2012). GMC Confidentiality guidance.