Human-Computer Interaction Research Will Make Personal Genomic Data Accessible

The National Science Foundation has awarded Associate Professor of Technology Management and Innovation Oded Nov a grant to study the role human-computer interaction can play in helping non-experts understand their personal genomic information.

In recent years there has been a dramatic growth in the scale and scope of the personal genomic information that is available to almost anyone. An increasing number of large-scale efforts, representing millions of people combined, are already under way.

For example, the U.K. government recently announced plans to sequence and return whole personal genomes to 100,000 British citizens by 2017. In the United States, the Veterans Administration aims to enroll 1 million veterans in a research study that incorporates genetic testing. Additionally, several companies are marketing genome sequencing services directly to consumers, who send in a saliva sample and pay a fee for the privilege of browsing their genome and reviewing a health report that provides risk assessment for hundreds of conditions.

As a result, laypeople are privy to unprecedented amounts of sensitive and often complex data about themselves. That knowledge can deeply influence their decisions and emotional states. Thus, questions about how people make sense of and engage with their personal genomic information—and how comfortable they feel about sharing it in order to advance scientific and biomedical research—are of increasing importance.

The research will improve interactive tools that will allow non-experts to visualize and understand their genomic data, focus on the specific information that is important to them, weigh probabilities, and decide how to act upon their new knowledge. Early results have demonstrated, for example, that offering an overview of the entire genomic report through a visual summary—such as a bubble graph—is more effective than offering that same information in other visualization types. “It is important,” Nov asserts, “that someone not simply be handed a sheet of paper with reams of data that might be perplexing or distressing to them.”

Nov is collaborating with Orit Shaer, the Clare Boothe Luce assistant professor of computer science and media arts and sciences at Wellesley College. The three-year, $155,000 grant was awarded by the NSF’s Division of Information and Intelligent Systems.