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Learning Data Ethics for Open Data Sharing

Data Use Agreements

We will not be going into great detail about Data Use Agreements (DUAs), because these are more often formally talked about when you’re using vendor proprietary data. In those cases, they often look like long contracts with legal clauses. However, Data Use Agreements can be short and easy to read too. Think of a Creative Commons CC-BY license, which is often the default open license placed on your data repository record. This is essentially stating, “User, you are allowed to USE this DATA, provided that you AGREE to acknowledge me as the data source.” Dataverse, a open data repository, has provided a sample Data Use Agreement for deidentified data that is a more contractual-looking version of what you’ll often see in the data repository record itself.

If we break down the clauses, we’ll essentially see (underlines added):

“III. Use of the Materials: “Use of the Materials include but are not limited to viewing parts or the whole of the content included in the Materials; comparing data or content from the Materials with data or content in other Materials; verifying research results with the content included in the Materials; and extracting and/or appropriating any part of the content included in the Materials for use in other projects, publications, research, or other related work products.”

Meaning, you can look at, work with, and reuse this data.

“III.1.B. Restrictions In his/her Use of the Materials, Downloader cannot: … produce connections or links among the information included in User’s datasets (including information in the Materials), or between the information included in User’s datasets (including information in the Materials) and other third-party information that could be used to identify any individuals or organizations, not limited to research subject.”

Meaning, don’t intentionally try to re-identify participant subjects.

University of North Carolina at Chapel Hill has provided 2 flowcharts about whether or not you should share data and if so whether or not you should have a Data Use Agreement. Check it out: https://research.unc.edu/wp-content/uploads/sites/61/2013/04/CCM3_039360.pdf

What would your Data Use Agreement say?

Source:

Office of Sponsored Research. (2013). Data Use Agreement Guidance. University of North Carolina at Chapel Hill. https://research.unc.edu/wp-content/uploads/sites/61/2013/04/CCM3_039360.pdf

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Restricted Access in FAIR Sharing 13 plain 2022-10-31T14:37:58-07:00
Jump to "Data Use Agreements" and "What Goes Into a Data Repository Record?" pages for additional details about how restricted access is handled.

Ethics and human subjects protections can come in especially to the “Accessible” part of FAIR, because you could choose to make access controlled and restricted, or… completely closed and not accessible at all.

How could you control access? Rather than letting someone click and immediately download the file, you might choose to make someone “Request Access” in order to get access to it, given conditions you set for user access eligibility. So, for example, you could make users sign an online form, clickable from your data repository record, in which they must agree to certain conditions of use (i.e. a Data Use Agreement, see below image), upon which they can then get automatic access from the repository--you won’t have to know who is requesting access, the process would be entirely controlled by settings you select for your file(s) in your data repository record.

An alternate option for controlled access could be that you make users submit a Request for Use application (see below image), clickable from your data repository record, which will be sent to you to review. If you accept the application request, the user would get automatic access from the repository.

Another alternate option for controlled access could be that your repository record directs users to send you an email (see below image). You may have a back and forth discussion with those users, and then you will send them specific files yourself. Here is an example of this:

One final option for controlling access could be that you require users to access and use the data in very special, controlled environments only, such as a virtual or physical enclave (see below image). In this case, the user would be inconvenienced with no access to the internet or their other files, and may have to travel to a specific enclave facility or register for a scheduled appointment to access the data. However, controlling the access environment would support a much higher degree of security for the sensitive data. If you’re trying to access federal microdata, there are Federal Statistical Research Data Centers (FSRDCs) located around the U.S. that allow eligible researchers to access requested restricted use data. Effective February 2023, there will be one consolidated microdata request website, https://www.researchdatagov.org/, across all the federal agencies; data access would be determined by the particular requested microdata and may be limited to specific physical enclaves or virtual data enclaves.

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Activity: Reflection
Perhaps you decide to restrict or close access to the data. Are there still ways you can you support the FAIRness of your data?

What might be an effect of making your metadata fields open, or sharing your documentation, even if you don’t share your data?
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Sources
- Go-FAIR.org. (n.d.) FAIR Principles. https://www.go-fair.org/fair-principles/
- Federal Statistical Research Data Centers. (2022, October 19). Available Data [webpage]. Census Bureau. https://www.census.gov/about/adrm/fsrdc/about/available_data.html
- Meyer, M.N. (2018). Practical tips for ethical data sharing. Advances in Methods and Practices in Psychological Science, 1(1), 131-144. https://doi.org/10.1177/2515245917747656