Registry Research and Medical Privacy

Medical progress is possible largely because we learn from our successes and our failures. Researchers often make an assessment of where things stand for a given medical condition through disease registries that attempt to include everyone who has received a diagnosis of and been treated for a given condition in an institution, a region, or a nation. These critical data bases have been used to help us understand how care is delivered and the outcomes achieved. Sadly, around the world, data repositories are now at risk of significant bias because concern about privacy has led to the requirement that consent . . .