Privacy in Epidemiological Research

Privacy in Epidemiological Research

Laws and ethical guidelines concerning privacy in research are based upon a set of presumptions about what the public thinks. Unfortunately these presumptions are nothing more than best guesses. Using mixed methods, this project examines what people really do think about privacy in research and the extent and manner to which it should be protected. The qualitative phase of this research is complete. The findings of this phase indicate that privacy law as it applies to much epidemiological research is out of step with community views. It is overly broad and captures information about which there is little sensitivity. It also fails to provide the types of protection necessary for Aboriginal and Torres Strait Islander populations.