Privacy and HCI for Personal Genomics

While considering HCI perspective on personal genomics, we partnered with the Personal Genome Project. The nature of the Personal Genome Project (PGP) as an open source online database of personal genomic information raises important questions regarding a participant’s privacy and willingness to share their information publicly. The PGPHCI team, led by Orit Shaer, in collaboration with Dr. Oded Nov (NYU) and with Dr. Darakhshan Mir (Wellesley College) investigates privacy and sharing in the context of personal genomics.

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While conducting an intensive literature review of the field, student researcher Claire Cerda, led the team to discuss how people have unique attitudes and behaviors when it comes to maintaining their privacy and security. Such behaviors include clearing cookies from a browser before logging off of the computer, or covering the keypad when entering a pin number connected to a debit card. Some people are very concerned about having their credit card information stolen when they pay for products online, but some are more trusting in the system. These attitudes and behaviors may vary based on a person’s technical skill or a person’s age, for example. In order to better understand user’s attitudes and behaviors regarding privacy, the team implemented a privacy index developed by psychology Professor Tom Buchanan of the University of Wesminster. Buchanan’s privacy index builds upon the work of the well-respected scholar Alan Westin, who was one of the first to study privacy and develop a way of measuring people’s feelings and behavioral patterns. Buchanan included more technologically relevant questions about the internet and online personal security that was not fully available during Westin’s time. The Buchanan index is made up of three separate scales: a privacy concern scale, a technical protection scale, and a general caution scale. The privacy concern scale measures a person’s attitude and the technical practice and general caution scales measure a person’s behavior about privacy and security. The PGPHCI team tested the scale among six individuals. Check out the results of our pilot study below. The graph presents a score between 0-4 on three privacy dimensions for each of our 6 pilot participants.

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From the pilot test, the team was able to assess the effectiveness of the index and also understand its capabilities in an online survey.

The team also explored the risks and benefits of sharing personal genomic information among different circles of people. For example, the risks and benefits of sharing personal genomic information with family, friends, scientists, or on social media. The team will test whether making users aware of the risks and benefits of sharing will positively influence the amount of data they are willing to share. The study will continue in the next upcoming months, and the PGPHCI team looks forward to presenting its work at future conferences. Stay tuned for more information…


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