AEGiS-APPJ: Data Linkage and Subject Anonymity for HIV Testing

Important note: Information in this article was accurate in 1990. The state of the art may have changed since the publication date.

Data Linkage and Subject Anonymity for HIV Testing

AIDS & Public Policy Journal 5, no. 4 (Winter 1990): 189-90
Rodabe P. Bharucha-Reid, M. Anthony Schork, and Stanley A. Schwartz

Screening for human immunodeficiency virus (HIV) infection is a highly sensitive matter, because of the grave psychological and physiological consequences of a positive test result. Nevertheless, such testing is often necessary, so that infected persons can modify behavioral patterns that may put others at high risk of infection. Testing is also essential to the estimation of seropositive or seroconversion rates. In a longitudinal study design to collect data on seroconversion rates, subjects must return for repeat testing and their data must be matched over time. This research approach requires a method for identifying subjects without compromising either their rights to privacy and information about their conditions, on the one hand, or society's interest in informing seropositive individuals of their infection status, on the other. To keep all of these factors in balance, investigators have had to weigh the ethical and legal ramifications of established study procedures and designs. The approach presented here would permit investigators to link data over time without identifying individuals by name.
901215
APPJ905409

AEGiS is made possible through unrestricted grants from Boehringer Ingelheim, Elton John AIDS Foundation, Bridgestone/Firestone Charitable Trust, the National Library of Medicine, and donations from users like you. Always watch for outdated information. This article first appeared in 1990. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1986, 1990. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .