Practical Tips for Ethical Data Sharing

This Tutorial provides practical dos and don’ts for sharing research data in ways that are effective, ethical, and compliant with the federal Common Rule. I first consider best practices for prospectively incorporating data-sharing plans into research, discussing what to say—and what not to say—in consent forms and institutional review board applications, tools for data de-identification and how to think about the risks of re-identification, and what to consider when selecting a data repository. Turning to data that have already been collected, I discuss the ethical and regulatory issues raised by sharing data when the consent form either was silent about data sharing or explicitly promised participants that the data would not be shared. Finally, I discuss ethical issues in sharing “public” data.

[1]  Heather A. Piwowar,et al.  Sharing Detailed Research Data Is Associated with Increased Citation Rate , 2007, PloS one.

[2]  G. Church,et al.  From genetic privacy to open consent , 2008, Nature Reviews Genetics.

[3]  C. Grady,et al.  What makes clinical research ethical? , 2000, JAMA.

[4]  J. P. Porter.  The federal policy for the protection of human subjects. , 1991, IRB.

[5]  Raymond Heatherly,et al.  A Game Theoretic Framework for Analyzing Re-Identification Risk , 2015, PloS one.

[6]  Vitaly Shmatikov,et al.  Robust De-anonymization of Large Sparse Datasets , 2008, 2008 IEEE Symposium on Security and Privacy (sp 2008).

[7]  Thea Marie Drachen,et al.  Sharing data increases citations , 2016 .

[8]  Michelle N. Meyer,et al.  Regulating the Production of Knowledge: Research Risk-Benefit Analysis and the Heterogeneity Problem , 2012 .

[9]  César A. Hidalgo,et al.  Unique in the Crowd: The privacy bounds of human mobility , 2013, Scientific Reports.

[10]  K. N. Dollman,et al.  - 1 , 1743 .

[11]  D. Borsboom,et al.  The poor availability of psychological research data for reanalysis. , 2006, The American psychologist.

[12]  Nicholas R Cozzarelli,et al.  UPSIDE: Uniform principle for sharing integral data and materials expeditiously. , 2004, Proceedings of the National Academy of Sciences of the United States of America.

[13]  Massimo Barbaro,et al.  A Face Is Exposed for AOL Searcher No , 2006 .

[14]  Latanya Sweeney,et al.  k-Anonymity: A Model for Protecting Privacy , 2002, Int. J. Uncertain. Fuzziness Knowl. Based Syst..

[15]  John C. Norcross,et al.  Ethical Principles of Psychologists and Code of Conduct , 2013 .

[16]  K. Adolph,et al.  Practical Solutions for Sharing Data and Materials From Psychological Research , 2018, Advances in methods and practices in psychological science.

[17]  M. Hagen,et al.  Ethical principles of psychologists and code of conduct. , 2002, The American psychologist.

[18]  Daniel C. Barth-Jones,et al.  The 'Re-Identification' of Governor William Weld's Medical Information: A Critical Re-Examination of Health Data Identification Risks and Privacy Protections, Then and Now , 2012 .

[19]  Y. de Montjoye,et al.  Unique in the shopping mall: On the reidentifiability of credit card metadata , 2015, Science.

[20]  Heather A. Piwowar,et al.  Data reuse and the open data citation advantage , 2013, PeerJ.

[21]  Eran Halperin,et al.  Identifying Personal Genomes by Surname Inference , 2013, Science.

[22]  Alberto Accomazzi,et al.  Linking to Data - Effect on Citation Rates in Astronomy , 2011, ArXiv.