title: Privacy protectionism and health information: is there any redress for harms to health?
abstract: Health information collected by governments can be a valuable resource for researchers seeking to improve diagnostics, treatments and public health outcomes. Responsible use requires close attention to privacy concerns and to the ethical acceptability of using personal health information without explicit consent. Less well appreciated are the legal and ethical issues that are implicated when privacy protection is extended to the point where the potential benefits to the public from research are lost. Balancing these issues is a delicate matter for data custodians. This article examines the legal, ethical and structural context in which data custodians make decisions about the release of data for research. It considers the impact of those decisions on individuals. While there is strong protection against risks to privacy and multiple avenues of redress, there is no redress where harms result from a failure to release data for research.
authors.affiliation: School of Law, The University of Western Australia. judy.allen@uwa.edu.au
authors.forename: Judy
authors.initials: J
authors.lastname: Allen
authors.affiliation: School of Population Health, The University of Western Australia.
authors.forename: C D'arcy J
authors.initials: CD
authors.lastname: Holman
authors.affiliation: Indiana University Center for Bioethics, Indiana University Center for Law, Ethics and Applied Research (CLEAR) in Health Information.
authors.forename: Eric M
authors.initials: EM
authors.lastname: Meslin
authors.affiliation: The University of Western Australia.
authors.forename: Fiona
authors.initials: F
authors.lastname: Stanley
mesh_terms: D022126:Access to Information / Q000331:legislation & jurisprudence*; D035843:Biomedical Research; D035881:Compensation and Redress / Q000331:legislation & jurisprudence*; D003219:Confidentiality / Q000331:legislation & jurisprudence*; D016208:Databases, Factual; D006801:Humans