Learning Data Ethics for Open Data SharingMain MenuAbout This ProjectTable of ContentsIntroduction to this OER, and list of topicsIntroduction to Data EthicsWhat Constitutes as Sensitive Data?Effects of Good/Bad Data EthicsIntroduction to Data SharingWhat Could You Share?Journal and Funder MandatesFAIR Data SharingRestricted Access in FAIR SharingWhat Goes Into a Data Repository Record?Introduction to Data CurationCuration Workflows and ChecklistsIRB Applications and Data Management PlansInformed ConsentData Use AgreementsRisk Assessment and De-identificationMachine Learning and Big Data ResearchLynnee Argabright5e34677fb40215fff81dbaad4ee2c305e4977a8e
See More Pages about Restricted Access
12022-10-31T14:40:03-07:00Lynnee Argabright5e34677fb40215fff81dbaad4ee2c305e4977a8e401802Box for jumping between pagesplain2022-10-31T18:25:40-07:00Lynnee Argabright5e34677fb40215fff81dbaad4ee2c305e4977a8eJump to "Data Use Agreements" and "What Goes Into a Data Repository Record?" pages for additional details about how restricted access is handled.
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12022-04-03T09:05:48-07:00Restricted Access in FAIR Sharing17plain2022-10-31T18:44:19-07:00 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? ------------------------
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