When conducting research with human subjects, Research Ethics Board approval is necessary. Although there is no specific section for data, several sections of the REB request form require researchers to provide information on their data collection processes, data storage and data security. Here are some examples of questions with regards to research data management that researchers can expect when requesting REB approval .
Provide a sequential description of the methods and procedures to be followed to obtain data. Describe all methods that will be used.
Privacy and Confidentiality
a) Describe the degree to which the anonymity of participants and the confidentiality of data and other identifiable study materials will be assured and the specific methods to be used for this, both during the research and in the release of findings.
b) Describe the use of data identification coding systems and how and where data will be stored. Describe any potential use of the data by others.
c) Who will have access to identifiable data?
d) What will happen to the identifiable data after the study is finished?
For more information on research ethics at McGill, consult the Research Ethics Board website.
Not all data can or need to be open.
Sensitive data/propietary data include:
Portage has released a series of documents (October 2020) as part of a toolkit for researchers working with sensitive data in the Canadian research context (see below, available in French and English).
The Data Curation Network (US-based) has also released a comprehensive Primer on Human Subjects Data Essentials
The Finnish Social Science Data Archive hosts a guide on methods for anonymizing and de-identifying human subjects data, including both qualitative and quantitative approaches
OpenAire Sensitive Data Guide (Europe)
Quick Guide to HIPAA (Stanford University)
Guidance on the HIPAA Privacy Rule, includes a definition of Protected Health Information (US Department of Health and Human Services)
Harvard's DataTags project is working on secure transfer and storage solutions for publishing sensitive data to Dataverse
Samarati, P., & Sweeney, L. (1998). Protecting privacy when disclosing information: k-anonymity and its enforcement through generalization and suppression.
Sweeney, L. (2000). Simple demographics often identify people uniquely. Health (San Francisco), 671(2000), 1-34.
For a general overview on copyright issues related to data, please see this Guide to Licensing Open Data from the Open Knowledge Foundation.
The following are typical Creative Commons license templates that are applied to data:
Not sure what license to select? Creative Commons has a neat tool to help.