2018
DOI: 10.1146/annurev-biodatasci-080917-013416
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Privacy Policy and Technology in Biomedical Data Science

Abstract: Privacyis an important consideration when sharing clinical data, which often contain sensitive information. Adequate protection to safeguard patient privacy and to increase public trust in biomedical research is paramount. This review covers topics in policy and technology in the context of clinical data sharing. We review policy articles related to (a) the Common Rule, HIPAA privacy and security rules, and governance; (b) patients’ viewpoints and consent practices; and (c) research ethics. We identify key fea… Show more

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Cited by 40 publications
(40 citation statements)
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“…In the United States (US), research must follow the Federal Policy for the Protection of Human Subjects (the "Common Rule") (Arellano, Dai, Wang, Jiang, & Ohno-Machado, 2018). This requires that specific consent be obtained from participants before their data and/or specimens can be used not only for the research project for which they are enrolling, but also for future research that may use such material, which often is the case of ENIGMA projects.…”
Section: Data Sharing and Re-usementioning
confidence: 99%
“…In the United States (US), research must follow the Federal Policy for the Protection of Human Subjects (the "Common Rule") (Arellano, Dai, Wang, Jiang, & Ohno-Machado, 2018). This requires that specific consent be obtained from participants before their data and/or specimens can be used not only for the research project for which they are enrolling, but also for future research that may use such material, which often is the case of ENIGMA projects.…”
Section: Data Sharing and Re-usementioning
confidence: 99%
“…Limited by the reality of strict privacy policies and nonuniform medical management systems, most medical samples are inaccessible, especially labelled samples [ 34 , 35 ]. Hence, transfer learning techniques were employed to train the EfficientNet-B5 network given our relatively moderate training dataset.…”
Section: Methodsmentioning
confidence: 99%
“…Issues related to institutional regulations are especially challenging for international collaborations, as policies differ widely by country (Arellano et al, 2018;Chassang, 2017;Dove, 2018). Effective coordination of multi-site studies is especially challenging without dedicated personnel and administrative resources.…”
Section: Multi-site Studiesmentioning
confidence: 99%