June 14, 2017
Written by Jon Cohen
This post originally appeared on Science.
For the first time, researchers, ethicists, lawyers, and community representatives will meet to discuss balancing the public health benefits and the potential risks of creating a massive database of HIV sequences from people living in sub-Saharan Africa. The Phylogenetics and Networks for Generalised HIV Epidemics in Africa (PANGEA HIV) consortium for the past 4 years has been sequencing HIVs plucked from blood samples that were collected from 20 different clinical trials. The relationship between these sequences allows researchers to create family trees, or phylogenies, that can reveal transmission clusters and potentially offer novel ways for public health workers to intervene and try to slow HIV’s spread. But the meeting, which will be held in London, will also discuss the way these same data can cause harm. Phylogenetic HIV information has been used to prosecute people for transmitting HIV in several countries. What’s more, the clusters can also reveal behavior that’s often criminalized or stigmatized such as men having sex with men or people injecting drugs. PANGEA HIV anonymizes the data and takes several precautions to make sure that individuals cannot be identified. But these protections have been breached in the past, and the meeting will discuss how best to make sure that people who provide their HIV samples are not punished for participating in efforts that ultimately aim to help people control their infections and slow spread in communities.
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