Ethical and Legal Issues
When publishing data, it is vital to consider the rights and responsibilities
you have with regard to issues of confidentiality and intellectual
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 utilized with other public
information to identify research participants. If so, steps should be taken to remove or mask these in public-use data files.
- Obtain a confidentiality review: A benefit to 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 MIT regulations: MIT researchers concerned
about confidentiality issues with their data should consult the MIT Committee
on the Use of Humans as Experimental Subjects (COUHES).
- 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?
The ICPSR DSDR
program has resources
for data producers including a tool
for Designing a Restricted Data Use Contract.
- Learn about guidelines from the National Academy
Their Online Ethics Center includes a discussion of Responsible Collection, Retention, Sharing, and Interpretation of Data.
Intellectual Property Issues
Sharing data that you produced/collected yourself:
- Data is not copyrightable (yet a particular expression of data can be, such as a chart or table in a book).
- 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).
- 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.
Sharing data that you have collected from other sources:
If you are uncertain as to your rights to disseminate data, MIT
researchers also can consult the Office of
General Counsel. Note: Laws about data vary outside the U.S.