The code explains the issues surrounding the anonymisation of personal data, and the disclosure of data once it has been anonymised. It explains the relevant legal concepts and tests in the Data Protection Act 1998 (DPA). The code provides good practice advice that will be relevant to all organisations that need to convert personal data into a form in which individuals are no longer identifiable.
A series of templates, including informed consent guidelines and checklist, as well as template for child assent and parent permission forms and online consent builder tool
A series of templates developed by the WHO ERC to assist researchers in the design of their informed consent forms.
Concerns about disclosure risk have grown as more datasets have become available online and it has become increasingly easy to link data. ICPSR works to ensure that the appropriate level of confidentiality remains intact for all of its data holdings. This guide includes recommendations on language to avoid and language to use in informed consent.
HSR provides foundational training in human subjects research and includes the historical development of human subject protections, ethical issues, and current regulatory and guidance information. Various paid courses covering Human Subjects Research, Institutional Review Board (IRB) Administration, and Information Privacy and Security.