Confidentiality

• Pages: 173-174

Contenidos

• The Issue.
• Legal and Policy Considerations.
• Practice Example.
• References.

Page 173

The Issue

Confidentiality of research subjects and their identifiable health data is an acute concern in HIV research. Grounded in legal, ethical, and human rights principles of autonomy (which includes privacy interests in the control of one's personal information), confidentiality is a safeguard against the harms from stigma and discrimination that can result from participating in HIV research, publicizing HIV serostatus, or identifying risk behaviors. Failing to protect confidentiality and privacy adequately deters individuals from participating in HIV research.

The acquisition and use of personal data relating to HIV is essential to advance the health of society through biomedical research, epidemiological studies, treatment, and prevention of HIV. However, there is a tension between the use of HIV data to promote the public's health and the individual's interests in privacy and nondiscrimination. Practitioners (e.g., health care providers, researchers, or public health officials) may justifiably access HIV data for laudable purposes, but they must also adhere to robust confidentiality and security measures.

Legal and Policy Considerations

Confidentiality of human subject research data is protected, in part, through the informed consent process (see Topic 9.2). Use or disclosure of identifying information may not occur generally unless a research subject (or his/her legal guardian) consents (or authorizes). Additional confidentiality protections approved by ethics boards assure that researchers limit use and disclosure of identifiable data to the minimum necessary to achieve the research goals. Ethics boards may also evaluate the adequacy of security measures (such as the use of technology) to protect subject privacy.

Additional balancing is needed for purely records-based HIV research. While ethics board review is necessary in all cases of research involving humans or their data, some legal schemes allow an ethics board to waive individual informed consent for records-based research if it concludes that there are only minimal risks to individuals that are outweighed by anticipated benefits.

In some cultures, community input or consent may be needed prior to the performance of HIV research. Underlying these requirements is the need to respect the privacy (and other) interests of the community as distinct from the confidentiality...