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Fairchild AL, Gable L, Gostin LO, Bayer R, Sweeney P, Janssen RS. Public goods, Private data: HIV and the history, ethics and uses of identifiable public health information. Public Health Rep. 2007;122 Suppl 1:7-15
| At-a-glance | |||
| Application | Level | Registry Users | Customers Users |
| Principles | Intermediate | Management Steward Research/Surveillance |
All Customers |
This well researched article starts with a presentation of the history of the collection and use of identifiable health information for public health purposes, covering both public health interventions (i.e. partner notification) as well as research and surveillance. Despite the title, the article does not focus on HIV, but rather covers a broad range of public health surveillance systems, including cancers registries, although some of the issues, such as public release of names during a public health crisis involving transmissible diseases, are not applicable to cancer registries. The second half of the article presents a code of restraint for using identifiable data to achieve affirmative public health duties, an ethical framework for considering the uses of the data, including data releases. Rightly so, the first point in this framework is that we must use the data we collect, and failure to do so must be justified.
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