Restricting data’s use: A spectrum of concerns in need of flexible approaches
Keywords:data archives, restricted access systems, privacy, confidentiality
As researchers consider making their data available to others, they are concerned with the responsible use of data. As a result, they often seek to place restrictions on secondary use. The Research Connections archive at ICPSR makes available the datasets of dozens of studies related to childcare and early education. Of the 103 studies archived to date, 20 have some restrictions on access. While ICPSR’s data access systems were designed primarily to accommodate public use data (i.e. data without disclosure concerns) and potentially disclosive data, our interactions with depositors reveal a more nuanced notion range of needs for restricting use. Some data present a relatively low risk of threatening participants’ confidentiality, yet the data producers still want to monitor who is accessing the data and how they plan to use them. Other studies contain data with such a high risk of disclosure that their use must be restricted to a virtual data enclave. Still other studies rest on agreements with participants that require continuing oversight of secondary use by data producers, funders, and participants. This paper describes data producers’ range of needs to restrict data access and discusses how systems can better accommodate these needs.
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Copyright (c) 2019 Dharma Akmon, Susan Jekielek
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