Genetics as public health in Brazil: integrating rare genetic disease and beyond

In 2014, Brazilian legislation guaranteed, for the first time, the comprehensive integration of rare genetic disease within public health. This project will use an interdisciplinary international network to develop preliminary qualitative research that can examine how these developments are currently unfolding. 

It will examine what obstacles, as well as expectations and benefits, these developments may create for a range of scientists, health professionals and patients. 

The network will include leading geneticists and social scientists from three newly established reference centres located in comparatively diverse regions in Brazil – Porto Alegre, Salvador and Rio de Janeiro – as well as international collaborators.