Literature DB >> 19385822

Introduction: data sharing and disclosure limitation techniques.

Joan E Sieber.   

Abstract

THIS SPECIAL SECTION OF JERHRE is in response to the needs of institutions to develop advanced data sharing capabilities. On October 1, 2003, the National Institutes of Health (NIH) initiated a requirement that investigator-initiated proposals for grants with direct costs over $500,000 in any year incorporate plans to accommodate sharing research data. The requirement stipulates that such plans describe the procedures through which shared data would be rendered "free of identifiers that would permit linkages to individual research participants and variables that could lead to deductive disclosure of the identity of individual subjects." (http://grants2.nih.gov/grants/policy/data_sharing). We expect that many researchers who deal with human research data are unfamiliar with the procedures presented in the ensuing articles. These sophisticated procedures have been developed to help protect confidentiality of subjects' data in files that are shared, while simultaneously preserving the analytic value of data for secondary users. Among these are procedures developed by government statisticians that include innovative methods to prevent deductive disclosure of identities. More recently, academic researchers and data experts have adapted or extended these methods. Together, these methods aim to achieve both disclosure limitation and retention of key analytic usefulness of the shared data.

Entities:  

Year:  2006        PMID: 19385822     DOI: 10.1525/jer.2006.1.3.47

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  4 in total

Review 1.  Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.

Authors:  Susan Bull; Nia Roberts; Michael Parker
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

2.  Conducting Digital Intervention Research among Immigrant Survivors of Intimate Partner Violence: Methodological, Safety and Ethnical Considerations.

Authors:  Bushra Sabri; Jyoti Saha; Jennifer Lee; Sarah Murray
Journal:  J Fam Violence       Date:  2022-04-29

Review 3.  Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.

Authors:  Susan Bull; Phaik Yeong Cheah; Spencer Denny; Irene Jao; Vicki Marsh; Laura Merson; Neena Shah More; Le Nguyen Thanh Nhan; David Osrin; Decha Tangseefa; Douglas Wassenaar; Michael Parker
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

4.  Human Subjects Protection and Technology in Prevention Science: Selected Opportunities and Challenges.

Authors:  Anthony R Pisani; Peter A Wyman; David C Mohr; Tatiana Perrino; Carlos Gallo; Juan Villamar; Kimberly Kendziora; George W Howe; Zili Sloboda; C Hendricks Brown
Journal:  Prev Sci       Date:  2016-08
  4 in total

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