Policymaking to preserve privacy in disclosure of public health data: a suggested framework

• Published in: Journal of medical ethics Vol. 41; no. 3; pp. 263 - 267
• Main Authors: Mizani, Mehrdad A, Baykal, Nazife
• Format: Journal Article
• Language: English
• Published: England Institute of Medical Ethics and BMJ Publishing Group Ltd 01.03.2015; BMJ Publishing Group Ltd; BMJ Publishing Group LTD
• Subjects: Algorithms; Bioethics; Company systems management; Confidentiality; Confidentiality - ethics; Confidentiality - legislation & jurisprudence; Confidentiality - standards; Confidentiality - trends; Diabetes; Disclosure - legislation & jurisprudence; Disclosure - standards; Disclosure - trends; Disclosure of information; Gender; Government regulation; Humans; Hypertension; Information management; Information sharing; Laws, regulations and rules; Medical records; Medical research; Policy Making; Postal codes; Privacy; Privacy, Right of; Public health; Public Health - statistics & numerical data; Public health ethics; Public Policy - trends; Right of privacy; Turkey; Turkey; Public Health Ethics; Confidentiality/Privacy; Policy Guidelines/Inst. Review Boards/Review Cttes; Information Technology
• ISSN: 0306-6800; 1473-4257
• DOI: 10.1136/medethics-2012-100731

Health organisations in Turkey gather a vast amount of valuable individual data that can be used for public health purposes. The organisations use rigid methods to remove some useful details from the data while publishing the rest of the data in a highly aggregated form, mostly because of privacy concerns and lack of standardised policies. This action leads to information loss and bias affecting public health research. Hence, organisations need dynamic policies and well-defined procedures rather than a specific algorithm to protect the privacy of individual data. To address this need, we developed a framework for the systematic application of anonymity methods while reducing and objectively reporting the information loss without leaking confidentiality. This framework acts as a roadmap for policymaking by providing high-level pseudo-policies with semitechnical guidelines in addition to some sample scenarios suitable for policymakers, public health programme managers and legislators.