Data Management Toolkit @ UNH

It is vital to maintain the confidentiality of research subjects for reasons of ethics and to ensure the continuing participation in research. At the same time, data on research subjects can be shared if proper steps are taken to maintain participant confidentiality:

• Informed consent should make a provision for data sharing: When obtaining informed consent from study participants, ensure confidentiality while also enabling the option of data sharing. Even if you are not certain that you will share your research data with others, you must obtain informed consent at the outset. For an example of how to write informed consent forms to allow for data sharing, see the U.K. Data Archive guide to consent.
• Evaluate the sensitivity of your data: Researchers should consider whether or not their data contains either direct or indirect identifiers that could be used, when combined with other public information, to identify research participants. If so, steps should be taken to remove or mask these identifiers in public-use data files.
• Obtain a confidentiality review: A benefit of depositing your data with some archives, such as ICPSR, is that their staff will review your data for the presence of confidential information.
• Comply with regulations for health research: HIPPA Privacy Rule, Information for Researchers.
• Enable restricted use of your data: Do you want to make your data available in a more restricted, limited-access manner?  For more information about restricted use data, check out the ICPSR DSDR program and the Preparing Data for Sharing section of the ICPSR Guide to Social Science Data Preparation and Archiving.
• Learn about guidelines from the National Academy of Engineering: Their Online Ethics Center includes a discussion of  Responsible Collection, Retention, Sharing, and Interpretation of Data.

• Data is not copyrightable: A particular expression or collection of data may be copyrighted (e.g., a database; chart or table in a book) - in this case the "compilation" may be copyrightable, but the underlying data is not.  If you have questions about copyright, UNH researchers can consult the Library or the General Counsel & Secretary. Note: Laws about data vary outside the U.S.
• Data can be licensed: Some data providers apply licenses that limit how the data can be used, such as to protect the privacy of participants in a study or guide downstream uses of the data (e.g., requiring attribution or forbidding for-profit use).
• Sharing your data: If you want to promote sharing and unlimited use of your data, you can make your data available under a CC0 Declaration to make this explicit.