Privacy risks and protective measures

Progress in informatics allows for the storage, processing, and interchange of an ever-increasing amount of data. Some important pieces of information (our own genetic code) might become available to multiple users or organizations in years to come and might be used in ecological studies of disease prevalence. The long-term consequences of having genetic codes and biochemical parameters accessible to governmental bodies are not yet known. It is impossible to make long-term predictions, but increased data sharing, with all the caveats exemplified in this chapter, will foster clinical research and in turn benefit patients. On the other hand, we might have to surrender part of our privacy and aim for a mutual sense of progress to harmonize the right to confidentiality with population well-being.