Remember that recent news story about investigators using publicly available family tree information to identify a criminal suspect? Well, family relationships are also of interest to researchers. A recent New York Times story discussed a trend of using the emergency contact information patients give their healthcare providers to conduct research. As the story puts it, “Researchers have begun experimenting with using emergency contacts gathered from medical records to build family trees that can be used to study the heritability of hundreds of different attributes, and possibly advance research into diseases and responses to medications.”
Not surprisingly, there is some debate among ethicists and research regarding whether such projects should be allowed. Patients don’t know told that this emergency contact information might be used for research, and the listed emergency contact probably never finds out about it either. So, is it ethical to allow this kind of research to proceed, given today’s rapidly evolving notion of personal privacy? Or, as we heard in a recent webinar about genetic data, is there a risk of overprotection if these types of studies are not allowed to proceed, causing a loss of potential useful research findings? What do you think?