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It is critical to ensure that the collection and dissemination of genomic and phenotypic information is achieved in a manner that respects the privacy rights of the patients from which it is derived. To achieve this goal, the eMERGE network is developing procedures (often implemented in working software) to embed privacy protection strategies in the data lifecycle. These procedures include the design of community advisory groups, patient consenting mechanisms, and de-identification methodologies that mitigate re-identification threats while maximizing the utility of the data shared for research purposes.
- Malin B, Benitez K, Masys D. Never to Old for Anonymity: a Statistical Standard for Demographic Data Sharing via the HIPAA Privacy Rule. J Am Med Inform Assoc. 2011 Jan-Feb;18(1):3-10. PMC3005867
- Tamersoy A, Loukides G, Nergiz ME, Saygin Y, Malin B. Anonymization of Longitudinal Electronic Medical Records. IEEE Trans Inf Technol Biomed. 2012 May;16(3):413-23. PMID: 22287248
- Atreya RV, Smith JC, McCoy AB, Malin B, Miller RA. Reducing patient re-identification risk for laboratory results within research datasets. J Am Med Inform Assoc. 2013 Jan 1;20(1):95-101. PMID: 22822040
- El Emam K, Rodgers S, Malin B. Anonymising and Sharing Individual Patient Data. BMJ. 2015 Mar 20;350:h1139. PMC4707567