title: Individual privacy versus public good: protecting confidentiality in health research.
abstract: Health and medical data are increasingly being generated, collected, and stored in electronic form in healthcare facilities and administrative agencies. Such data hold a wealth of information vital to effective health policy development and evaluation, as well as to enhanced clinical care through evidence-based practice and safety and quality monitoring. These initiatives are aimed at improving individuals' health and well-being. Nevertheless, analyses of health data archives must be conducted in such a way that individuals' privacy is not compromised. One important aspect of protecting individuals' privacy is protecting the confidentiality of their data. It is the purpose of this paper to provide a review of a number of approaches to reducing disclosure risk when making data available for research, and to present a taxonomy for such approaches. Some of these methods are widely used, whereas others are still in development. It is important to have a range of methods available because there is also a range of data-use scenarios, and it is important to be able to choose between methods suited to differing scenarios. In practice, it is necessary to find a balance between allowing the use of health and medical data for research and protecting confidentiality. This balance is often presented as a trade-off between disclosure risk and data utility, because methods that reduce disclosure risk, in general, also reduce data utility.
authors.affiliation: CSIRO Digital Productivity Flagship, GPO Box 664, Canberra 2602, ACT, Australia.
authors.forename: Christine M
authors.initials: CM
authors.lastname: O'Keefe
authors.affiliation: Department of Statistics, Harvard University Science Center, 1 Oxford Street, Cambridge, 02138-2901, MA, U.S.A.
authors.forename: Donald B
authors.initials: DB
authors.lastname: Rubin
mesh_terms: D001315:Australia; D035843:Biomedical Research / Q000331:legislation & jurisprudence* / Q000379:methods / Q000706:statistics & numerical data; D016494:Computer Security / Q000331:legislation & jurisprudence / Q000592:standards / Q000706:statistics & numerical data; D003219:Confidentiality / Q000331:legislation & jurisprudence* / Q000592:standards; D003627:Data Interpretation, Statistical; D005062:European Union; D019317:Evidence-Based Medicine / Q000331:legislation & jurisprudence* / Q000379:methods / Q000706:statistics & numerical data; D020408:Health Insurance Portability and Accountability Act; D006291:Health Policy / Q000331:legislation & jurisprudence*; D006801:Humans; D014481:United States
keywords: biostatistics; confidentiality; health care research; medical research; privacy