Genomic technologies have the power to transform individual healthcare for the better. But with that power comes responsibility—the responsibility to protect the privacy of the individual and to make ethical choices that respect the rights of communities and populations.
A newly established research theme at the Carl R. Woese Institute for Genomic Biology will address these and related issues. The new theme, Genomic Security and Privacy (GSP), will be led by Professor of Computer Science Carl Gunter. Assistant Professor of Political Science Aleksander Ksiazkiewicz will lead policy-based work within the theme.
“As the methods get cheaper to produce sequencing data . . . people are going to be a lot more concerned,” Gunter said. “Going back ten years ago when it cost hundreds of millions of dollars to sequence something, it wasn't really that much of a concern, whether the data might be captured . . . but now, it seems like every time you turn around, there's some new security- or privacy-related concern.”
Gunter and Ksiazkiewicz represent the two-pronged approach that the theme will take, simultaneously pursuing the identification of privacy concerns and development of strategies in the arenas of technology and policy. For example, genomic data collected in a medical setting could be vulnerable to the same cybersecurity risks that threaten other forms of personal data; however, unique formats for genomic data storage could lend themselves to unique, optimal data security solutions. Similarly, well-designed policy surrounding genomic data privacy should take into account the unique societal implications of such data, including genomic information that is shared across related individuals.
The theme’s work will be strengthened by the interdisciplinarity of its research team, which already includes researchers with backgrounds in computational genomics, electrical and computer engineering, nutrition, anthropology, business, and law.
“One of the things I’m most excited about, having people from so many different disciplines, is being able to draw on the expertise that they have . . . finding interesting intersections that we wouldn't find if we were just holed up in our own offices, distributed around campus,” Ksiazkiewicz said.
As the new theme ramps up activities, Gunter and other members have continued to play a role in related events around campus, including a recent NIH workshop on issues of equity and diversity in genomics and a TEDxUIUC talk by Gunter highlighting the urgency and everyday relevance of genomic privacy and security issues.
“The Golden State Killer is a pretty good example of what's in the wind. These direct to consumer [sequencing services] collect millions of data points, and those data points are enough that you can triangulate from them to find the name associated with anybody's DNA if they're of European descent,” Gunter said. “Big attention will need to be paid to the security and privacy of genomic data.”
Genomic Security and Privacy research theme membership:
Carl Gunter (Theme Lead and Technology Lead; Department of Computer Science)
Aleksander Ksiazkiewicz (Policy Lead; Department of Political Science)
Mikel Hernaez (Director, Computational Genomics, Carl R. Woese Institute for Genomic Biology) (CGRH)
Zbigniew Kalbarczyk (Department of Electrical and Computer Engineering)
Zeynep Madak-Erdogan (Department of Food Science and Human Nutrition) (ONC-PM)
Ripan Malhi (Department of Anthropology) (CGRH/GNDP/IGOH/RBTE)
Michael Shaw (Gies College of Business)
Saurabh Sinha (Department of Computer Science) (BSD/CABBI/GNDP)
Robin Wilson (College of Law)