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Ethical Principles of Privacy and Confidentiality

Packman, S

doi: 10.1097/01.ede.0000339577.65891.44
Abstracts: ISEE 20th Annual Conference, Pasadena, California, October 12–16, 2008: Symposium Abstracts

University California, Los Angeles, CA, USA.

Abstracts published in Epidemiology have been reviewed by the organizations of Epidemiology. Affliate Societies at whose meetings the abstracts have been accepted for presentation. These abstracts have not undergone review by the Editorial Board of Epidemiology.


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The ethical principles articulated almost 30 years ago in The Belmont Report, respect for persons, beneficence, and justice, inform research with human subjects and serve as the foundation for our federal regulations. The application of the ethical principles and federal regulations to epidemiological research raises questions regarding the autonomy and dignity of subjects through the process of informed consent as well as the potential risks to subjects, including the protection of individually identifiable private or confidential information. The National Bioethics Advisory Commission (NBAC) highlighted in their 2001 report that public health research has contributed greatly to the health and welfare of our society. The NBAC also noted long standing questions about epidemiological research and its relationship to the federal regulations for the protection of human subjects and Institutional Review Board (IRB) review. This presentation will begin by highlighting ethical research principles and regulatory requirements for epidemiological research with human subjects addressing: what is research, who is a human subject, and what are the ethical principles that inform research with human subjects. This will be followed by discussing balancing ethical principles with the goals of epidemiological research and questions that arise about the protection of human research subjects in epidemiological research, specifically privacy and confidentiality.

© 2008 Lippincott Williams & Wilkins, Inc.