Planning for Long-Term Use of Biomedical Data Proceedings of a Workshop (2020) / Chapter Skim
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3 Data Risks and Costs
3 Data Risks and Costs
Pages 20-28
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From page 20... ...
This trusted relationship is jeopardized if data producers withdraw from the agreement or if data users fail to deliver the intended value of the data. In order to enforce a data agreement, she continued, 20
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From page 21... ...
She described the data agreement itself as metadata that should be linked to the data sets and to the publication -- this supports the scientific integrity of a study as well as future responsible research. O'Hara cautioned that it is important to understand the difference between a legally binding contract and an agreement -- for example, contracts for the purchase of commercial data could have more complicated terms of use than data agreements with federal or state entities.
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From page 22... ...
According to the Cambridge Voter list, six people had his particular birth date; only three of them were men; and, he was the only one in his 5-digit ZIP code. FOR LONG-TERM USE OF BIOMEDICAL DATA 22 PLANNING Ethnicity Name Visit date Address ZIP Diagnosis Date Birth registered Procedure date Party Medication Sex affiliation Total charge Date last voted Medical Data Voter List Figure 1 Linking to re-identify data FIGURE 3.1 The quasi-identifier conundrum.
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From page 23... ...
He agreed with O'Hara that one should never share data without a data use agreement in place and that risk is proportional to the anticipated trustworthiness of the recipient. He noted that because there are many ways to manipulate data, people have proposed alternate data protection frameworks such as encrypted computation, secure hardware, and blockchain.
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From page 24... ...
Each time that researchers work with digital materials, a new set of costs arises to ensure continuity and accessibility of those materials. To gauge an organization's level of commitment to digital preservation, Owens suggested asking the organization's accountants the following 2 For more information about TRAC, see https://www.crl.edu/archiving-preservation/ digital-archives/metrics-assessing-and-certifying/trac, accessed October 1, 2019.
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Vilhuber wondered if there is an intermediate incentive to increase data sharing between the motivation to be a good citizen and the threat of a federal regulation. O'Hara said that data united at the state level for an operational need or for compliance reporting builds trust and incentivizes the
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From page 26... ...
He said that the group explored how universities currently address privacyrelated issues. For example, do Institutional Review Boards have the necessary skills and tools to support researchers in the proper sharing of data and to evaluate the privacy design of a study?
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From page 27... ...
The group also discussed ways to enforce funders' requirements for data sharing. She suggested that there would be value in implementing training at the beginning of a grant; then, at the end of a grant, principal investigators would be able to compare actual costs to costs forecasted in their data management plans.
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From page 28... ...
In response to a question from Patricia Flatley Brennan, National Library of Medicine, Levenstein said that although there was much group discussion about how to meet standards, there was no discussion about common data elements.
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