Table 1 Genomic data sharing vignette

Mary could be asked for permission for her genomic information and her clinical information, to be released into one or more scientific databases. This could help advance medicine and medical research by allowing other researchers to use this information. There are many scientific databases where Mary’s genetic and clinical information could go; some are maintained by Memorial University, some are maintained by the provincial Department of Health, some by international health organizations and some are maintained by private companies. Some of these databases are publicly accessible – meaning anyone can access them; others are restricted, and can only be accessed by approved researchers through an application process.

In genomic research studies, it is usually the case that neither Mary’s name nor any other personally identifying information about her will ever be released. Nobody will be able to know just from looking at a database that the information belongs to Mary. However, because our genetic information is unique to each one of us, there is a small chance that someone could trace the information back to a patient. The risk of this happening is very small, but may grow in the future. This is possible even if genomic data wasn’t shared with other researchers. As technology advances, databases with many patients’ genomic information will become more valuable to scientists, but there may also be new ways of tracing the information back to patients. With restricted databases, researchers who access patients’ genetic and clinical information will have a professional obligation to protect their privacy and maintain their confidentiality.