Guidelines for Confidentiality in Research on AIDS. NLM AIDSLINE Important note: Information in this article was accurate in 1987. The state of the art may have changed since the publication date.

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Guidelines for Confidentiality in Research on AIDS.

AIDS Res. 1983-84;1(4):275-97. Unique Identifier : AIDSLINE MED/87000006
Bayer R; Levine C; Murray TH

Abstract: The identification of Acquired Immune Deficiency syndrome (AIDS) three years ago has created a crisis of confidence. Persons with AIDS and others who might be research subjects recognize that research is essential to understand, treat, and prevent this devastating disease, yet they are concerned that information divulged for research purposes might be used in ways detrimental to their interests. Unless they have confidence in the system designed to protect their privacy and in the people to whom personal information is entrusted they may provide invalid or incomplete data. The problem, then, is: What procedures and policies will both protect the privacy interests of research subjects and enable research to proceed expeditiously? Now that major research efforts are being undertaken to tackle the many puzzling aspects of AIDS, this question has become an urgent one. These guidelines, developed by a multidisciplinary group representing diverse professional, public and social interests, are designed to provide the basis for the cooperation of the research community and the subjects of AIDS research. Addressed to research institutions, individual researchers, institutional review boards and public health departments, the recommendations seek changes deemed necessary to afford the fullest degree of protection for confidentiality compatible with sound scientific research.
Keywords: *Acquired Immunodeficiency Syndrome/PSYCHOLOGY Antibodies, Viral/ANALYSIS Blood Donors *Confidentiality Health Education Human Human Rights HTLV-BLV Viruses/IMMUNOLOGY Informed Consent Legislation Medical Records Population Surveillance Research Risk Support, Non-U.S. Gov't JOURNAL ARTICLE

KWDacquiredimmunodeficiencysyndrome/psychologyantibodies,viral/analysisblooddonorsKWDconfidentialityhealtheducationhumanhumanrightshtlv-blvviruses/immunologyinformedconsentlegislationmedicalrecordspopulationsurveillanceresearchrisksupport,non-uKWDsKWDgov'tjournalarticle
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M8710250

Copyright © 1987 - National Library of Medicine. Reproduced under license with the National Library of Medicine, Bethesda, MD.

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