It's vital to maintain confidentiality of research subjects for reasons of ethics and to ensure continued participation in research. Sometimes, research data resulting from funded research cannot be shared. There are policies that address this, such as Privacy Rule of the Health Insurance Portability and Accountability Act (HIPAA).
Researchers who want to ethically share sensitive and confidential data may want to consider the following:
Your primary asset is your intellectual work, it is important to understand and maintain your intellectual property rights. You will need to articulate how you are providing permissions or licenses in your Data Management Plan. This may or may not involve intellectual property rights depending on the type of data.
The following are some relevant University of California / UC Irvine policies related to research data, intellectual property, and confidentiality:
The three ODC licenses are:
Creative Commons (http://www.creativecommons.org/) also has a library of standardized licenses, and some of them apply to data and databases. The ODC-By license, for example, is the equivalent of a Creative Commons Attribution license (CC BY). CC BY licenses, however, require copyright ownership of the underlying work, whereas the ODC-By license applies to works not protected by copyright (such as factual data)
The two CC licenses that are of greatest relevance to data management are:
There is no single right answer as to which license to assign to a database or content. Note, however, that anything other than an ODC PDDL or CC0 license may cause serious problems for subsequent scientists and other users. This is because of the problem of attribution stacking. It may be possible to extract data from a data set, use it in a research project, and still maintain information as to the source of that data. It is possible to create a data set derived from hundreds of sources with each source requiring acknowledgement. Furthermore, the data in the other databases may not have originated with it, but instead sourced from other databases that also demand attribution. Rather than legally require that everyone provide attribution to the data, it might be enough to have a community norm that says “if you make extensive use of data from this data set, please credit the authors.”
The ownership of works produced by UC Irvine faculty, students, and non-academic staff is governed by the University of California Office of the President. This blog post summarizes current thinking about data ownership. The precise answer will depend on whether the project was created as part of sponsored research; the employment status of the creator; whether the work was conducted “pursuant to a specific direction or assigned duty…from the University”; and, if deemed to be an “encoded work,” whether substantial university resources were used in the creation of the encoded work.
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