Jennifer Lynch will be joining Joana Varon and Mariana Tamari from Coding Rights and Helen Wallace from Genewatch on a panel at RightsCon called "From devices to bodies: a tale on DNA data collection."
Beyond devices, our bodies are also becoming data sources. From facial recognition to collection of DNA information, data sets about our bodies are being crossed with data collected from our digital interactions in platforms and taking practices of profiling to another level. DNA datasets can reveal a fair amount of sensitive and private information such as medical history, predisposition for diseases and even behavioral tendencies. During the Covid-19 pandemic DNA data collection also started to show up in narratives to find the cure, vaccines as well as to develop cheaper and faster massive tests to control the disease spread.
Those arguments legitimize the massive control over body information but not without contradictions. Lack of proper regulation, reproduction of social, gender and racial bias, and also the tendency for police, public and private sector’s abuse when sharing and using sensitive data are issues that have been gaining space in public discussions about the implementation of body data technologies.
While convening actors from Brazil, US and European Union, to listen and learn from their experiences in the field, the panel will be an attempt to start mapping practices and possible concerns related to: (a) existing initiatives of DNA collection from public and private sector, ranging from Security Policies; find ancestrality information, donation of sperm or eggs for assisted reproduction or even health-related purposes, such as to avoid the spread of Covid-19 (b) reported cases of abuse, and if they include data transfer between Government entities and private companies; (c) the legal conditions in which the DNA data collection and treatment is being adopted and if it is appropriate to halt abuses. Therefore, this panel is meant to be a first exchange of the early stage of the matter and to discuss possible research agendas.