Analysis of HIV networks: Can we protect both public health and confidentiality?
Date & Time
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?
- Episodic Sexual Transmission of HIV Revealed by Molecular Phylodynamics
- Molecular Phylodynamics of the Heterosexual HIV Epidemic in the United Kingdom
- A public health model for the molecular surveillance of HIV transmission in San Diego, California
Other HIV resources:
KPBS These Days:"The Ethics Of Protecting HIV Patients And The Public"
You can view the video from this event here: vimeo.com/15752873
UCSD, Antiviral Research Center
Susan J. Little, M.D. is an Associate Professor of Medicine in the Department of Medicine, Division of Infectious Diseases, at the University of California, San Diego (UCSD). Dr. Little received her medical degree in 1987 from the Washington University School of Medicine, and then did her residency in Internal Medicine at Barnes Hospital in St. Louis, Missouri. She then completed an Infectious Diseases fellowship at UCSD.
Since joining the UCSD faculty in 1993, Dr. Little has developed one of the leading and most productive National Institute of Allergy and Infectious Diseases (NIAID)-sponsored programs in the United States for the identification, enrollment, and treatment of individuals with acute and recent HIV-1 infection. She directs the Clinical Core of the Acute Infection and Early Disease Research Program (AIEDRP) at UCSD, and oversees the integration of pathogenesis, translational, and clinical research in the UCSD Acute and Early HIV Infection (AEH) Program. Dr. Little is currently Co-Chair of the HIV Prevention Science Committee, a joint committee of the HIV Prevention Trials Network (HPTN) and the AIDS Clinical Trials Group (ACTG).
Dr. Little has published extensively in peer-reviewed journals and serves on the Editorial Boards of the Journal of Acquired Immune Deficiency Syndromes (JAIDS) and Antiviral Therapy. She has been invited to present her work at numerous international meetings, including the Conference on Retroviruses and Opportunistic Infections, the International HIV Drug Resistance Workshop, and the Infectious Diseases Society of America, and serves on the scientific committees of the International HIV Drug Resistance Workshop and the World Health Organization HIV Resistance Network (HIVResNet).