The concept of genomic privacy has recently become important due to the rise of sequencing services, which can inform people about their ancestry or genetic predispositions to health disorders. However, it is unclear what concerns people may have about data privacy. A new grant, awarded by the University of Illinois Urbana-Champaign and the Carl R. Woese Institute for Genomic Biology (IGB), aims to understand these concerns. The $35,000 grant will be used over the course of 18 months, with the option to renew for another 12 months.

“Although broad questions about genomic privacy concerns have been raised in the past, we’re trying to understand which particular aspects of genomic privacy are worrying to laypeople,” said Stephen Schneider, a research fellow in the Genomic Security and Privacy (GSP) theme at IGB. “We want to know how they define genomic privacy and what are the different types of questions they have. Hopefully, the results will give us ideas about how to develop technologies that address their privacy concerns.”

The researchers are hoping to sample a population of 1600 people, evenly divided between Caucasian, African American, American Indian, and Latinx communities. “According to the literature, racial and ethnic minorities tend to have more privacy concerns, but it is unclear why. For this reason, we need to build a questionnaire that allows us to examine the difference between racial and ethnic groups,” Schneider said.

Instead of asking laypeople what they’re worried about, previous studies have focused on issues that researchers expect laypeople to think about. To remedy this limitation, the researchers are going to ask open-ended questions to explore the privacy concerns. According to Carl Gunter (GSP leader), a professor of computer science, some of the questions that could arise include employer discrimination and family members finding out about health concerns.

“We will also be studying whether concerns about genomic privacy will correlate with other concerns, such as financial privacy, in the literature,” said Aleksander Ksiazkiewicz (GSP), an assistant professor in Political Science. “We can then understand if these are generic concerns or whether there is something unique in this context.”