Big Data, Big Potential: Privacy in Genetics Research and Analysis

March 5, 2015

Linda A. Malek

Linda Malek will be moderator of the event that will discuss the use of genetics in research and in data analysis that are rapidly growing fields and progress made in this arena allows genomic profiling to detect and more specifically treat various types of disease. Correspondingly, the sequencing of the entire genome, or “whole genome sequencing” has emerged with the potential to revolutionize the practice of medicine and the conduct of research. The use of whole genome sequencing in research presents a host of privacy issues, not least of which is the ability of researchers to deduce the identity of genetic donors through their DNA, the extent to which such voluminous data is otherwise identifiable, and how the privacy of this information can be protected, given that the state of the law in this area is not yet fully developed. 

This presentation will cover emerging legal and ethical issues in genetic research and genetic data analysis, including challenges and risks in protecting the privacy of genetic information, incidental findings in clinical research, and opportunities presented by the sharing of genomic data.