HIV, the virus that causes AIDS, is in a sense not one virus, but many different viruses. This is because it evolves quickly resulting in different characteristics for each person infected. These differences define both an opportunity and a risk for researchers who are looking for ways to decrease the spread of HIV. The opportunity is that by studying the virus in the blood of many different infected individuals, it is possible to find patterns of transmission that can help our society better target programs that are likely to have the greatest impact on reducing further infection. A related opportunity is that the resulting information could, for example, identify a particular individual as being a frequent source of new infections. From a public health perspective, as we now do for tuberculosis, it would be in the interest of the community to intervene with that particular individual. The risk in this case is that doing so may not be clear or acceptable to those individuals. The challenge here is complex.

The community of those at risk of HIV infection has a legitimate expectation that public health researchers would intervene to limit the role of an identifiable individual in contributing to further infections.

However individuals who have agreed to participate in a research study have a legitimate expectation of confidentiality.
While some people might argue that public health trumps the expectation of confidentiality, it is important to keep in mind that doing so could fuel distrust of the research community, resulting in decreased participation in research studies. In the long run, this would mean fewer opportunities to intervene either with individuals or with the larger community.

• Should research data ever be used as a basis for intervention with a particular individual?
• Is the possibility of intervention with an individual clear from existing approaches to informed consent?
• How can the informed consent process best be modified to increase understanding of how the data might be used?
• Who should be involved in figuring out how best to address this challenge?

Please join us for this first ever public discussion of this challenging issue for research and our community.

* Guest speaker: Susan Little, UCSD, Antiviral Research Center 

For more information please click here.