The right to privacy and confidentiality for health information is deeply rooted in American history and tradition and in federal and state law. People living with HIV also have special concerns in keeping their health information private. These individuals have long faced harassment, discrimination, and stigma from society because of their HIV infection, and they still face this in today’s society. HIV also disproportionately affects marginalized populations such as gay and bisexual men, people of color, people engaged in sex work, and people who use drugs, and these groups face increased stigma.
Aetna Privacy Breach
In July 2017, the insurance company Aetna mailed letters containing information about changes in pharmacy benefits and access to HIV medications and accidentally exposed customer HIV statuses in clear envelope windows. The plastic window on the envelope not only revealed patients’ names and addresses but also referenced filling prescriptions for HIV medications. The implication of this was that whoever saw the letter was able to see individuals’ protected health information.
Grindr Privacy Breach
Grindr is a dating app for LGBTQ individuals and has more than 3.6 million daily active users worldwide. The app has recently worked to address the stigma surrounding HIV and encourage users to get regularly tested for sexually transmitted infections. The app also offers free ads to remind users to get tested by showing HIV testing sites and has an option to remind users to get tested every 3 to 6 months.
Molecular HIV Surveillance
In the fight to end the HIV epidemic, there is now more of a focus on interrupting HIV transmission within clusters of people. There is an emerging field of molecular epidemiology that is using phylogenetic analysis to examine mutations in HIV strains to identify transmission patterns within communities and sexual and drug-using networks. The application of these tools offers an exciting way to effectively identify and intervene in places where HIV transmission is occurring. But there are some limitations and concerns with this type of information that must be considered. While the information can give a probability that two persons with HIV are closely linked, perhaps suggesting HIV transmission from one person to another, it does not show who transmitted HIV to whom. This technology also raises numerous unresolved privacy issues. These issues include potentially exposing individuals to criminalization, employment discrimination, or physical harm.
The O’Neill Institute will conduct a stakeholder convening in June 2018 that will bring together people living with HIV, federal, state and local health officials, ethicists, medical providers, and other stakeholders to identify and understand critical issues and facilitate a dialogue for how to proceed with the development and exploration of this technology in the way that maximizes HIV community support and minimizes harm. An appropriate investment in policy development to protect individuals will be critical to effectively using this technology to prevent HIV transmission.
The views reflected in this expert column are those of the individual authors and do not necessarily represent those of the O’Neill Institute for National and Global Health Law or Georgetown University. This blog is solely informational in nature, and not intended as a substitute for competent legal advice from a licensed and retained attorney in your state or country.