by Colleen Walsh
In today’s tech-filled world, digital information can be shared with the touch of a button. But that information is increasingly at risk, and often that risk is hidden from view.
Take Facebook Messenger. For years, many fans of the popular mobile app were unaware the users they were chatting with could easily track their locations until a Harvard College junior affiliated with Harvard’s Data Privacy Lab showed them what that looked like in real time. He created a tool that could plot the position of app users on a map accurate “to within a meter.” News about the map program, which was eventually downloaded more than 85,000 times, soon went viral and within days Facebook issued an update requiring Messenger users to opt in to share their locations.
That’s just one example of how work generated by the Data Privacy Lab, an initiative housed at Harvard’s Institute for Quantitative Social Science (IQSS) and founded by Latanya Sweeney, Daniel Paul Professor of the Practice of Government and Technology in both the Faculty of Arts and Sciences and Harvard Kennedy School (HKS), is having a real-world impact, which will continue to grow thanks in part to two new gifts. In recent months, a set of Data Privacy Lab-associated projects with far-reaching implications have received new funding: theDataMap that focuses on how health information is shared, and Tech Science, a program that is helping train the next generation of leaders at Harvard and beyond how to tackle complex data privacy problems and issues of online equity and fairness.
Tracking how health data is shared one state at a time
Sweeney has long been interested in how health data is shared. A graduate student at the Massachusetts Institute of Technology (MIT) in the 1990s, she refuted the Massachusetts’ Group Insurance Commission’s claim that the state employee health data they’d shared with researchers and other companies was anonymous. By comparing publicly available voter rolls with the health data’s basic biographical information, Sweeney correctly identified the record of then-governor William Weld. Her work inspired changes to the Health Insurance Portability and Accountability Act’s (HIPAA) privacy rule and even encouraged other countries to update their privacy policies involving health data. It was a simple experiment, says Sweeney, “but it had shown that our best practice wasn’t enough in the face of the current technology.”
|
|
Latanya Sweeney (photo credit: Kayana-Szymczak) |
That early work was the genesis of theDataMap, an online portal Sweeney created in 2010 that documents the flow of personal data, with a focus on how a patient’s health information is shared. To date, the map has documented more than 2,000 organizations in the United States that share personal health information, from physicians to financial institutions. It also tracks the kinds of health information that is being captured and dispersed. According to Google, the site has been linked to more than 14,000 times. Sweeney says it has appeared in more than 30 government publications around the world and has been referenced in at least three books. The new gift – from legendary patient privacy advocate Dr. Deborah Peel, a practicing physician and leading medical privacy expert who founded the lobbying firm Patient Privacy Rights in 2004 – is meant to fund the augmenting and updating of the DataMap for the digital age. Peel’s gift is helping a team at the Lab update the site with current data and investigate ways to better track data sharing in today’s mobile world.
Leading the effort is data expert Jimmy Huettig. Together, Huettig and a team of analysts are updating the Lab’s information around breach notices. In compliance with HIPAA regulations, when a person’s private health information is shared without their permission, the group holding the data, be it a private company or a public organization, must file a notice of the breach with the federal government. For the past few months, Huettig has been scouring the information contained in those announcements and cataloging the different organizations involved, searching through thousands of reports listed by state.
Huettig, who is finishing a master’s in data science at the Harvard Extension School, thinks there’s still much to be learned about how health information is shared today, given advances in cloud computing, wearable fitness trackers, and health-related apps that record everything from your steps to your sleep habits. “Most of us think only our doctor has our health records, but in fact, it’s so much more than that,” says Huettig. “How much more is what we are trying to understand.”
He is hopeful their work can help facilitate further changes to privacy rules and regulations that can make patient health data even more secure. “HIPAA is now almost 30 years old, and today things move so fast with cloud storage services, there’s really a need to update these kinds of privacy safeguards accordingly in order to represent our current data sharing realities,” says Huettig.
Paying it forward with a tech-savvy curriculum
For Sweeney, as important as conducting privacy research herself is training the next generation of leaders to do the same. The second Lab-related program to receive new funding is Tech Science, a field of study created by Harvard’s Department of Government in 2015 at Sweeney’s urging. A mix of theory and practice, the program works closely with the Lab to teach both undergraduates and students at HKS how to identify potential clashes between society and technology, how to test for them, and subsequently put their research findings out into the world. To help disseminate their results, Sweeney and her team also created the online publication forum techscience.org at IQSS, which highlights past and current student work. Previous student work has spurred the creation of new legislation and regulations, as well as changes in business practices at big tech companies.
|
| Leonie Barker Beyrle |
Leonie Barker Beyrle, an adjunct lecturer at HKS, preceptor at FAS, and research manager with the Tech Science program since 2022, points to a range of student-led projects developed in collaboration with the Lab, such as the Facebook Messenger map, that are making a difference. One study warned federal agencies about the ease with which bots instead of people were submitting comments on their websites. Another explored the accessibility of voter registration websites for the visually impaired. Current projects are exploring election security and how voting conspiracy theories spread on X, the online social media platform formerly known as Twitter.
In the Tech Science program, students are immersed in theory in the fall, and put their ideas into practice in the spring, conducting research and experiments. Those eager to go a step further can sign up for a smaller fall seminar where they dive even deeper into their research projects. And it’s not only tech-savvy students taking part, notes Barker Beyrle. The program continues to attract undergraduates interested in a range of concentrations from government and computer science to the arts and humanities. At HKS, students from the tech or government sectors sit next to students cross-registered from Harvard’s Graduate School of Education, the Graduate School of Design, MIT, and Tufts. “It makes for just a fascinating atmosphere in the classroom with so many different perspectives, and so many different backgrounds,” says Barker Beyrle.
A second gift to the Lab – this time/one from the Hopewell Fund – will support curriculum development as well as efforts to share student research proposals with organizations and scholars beyond Harvard’s gates. “Over the years we have generated more ideas than we have hours in the day to carry out and explore so we are really keen on sharing these gems of ideas focused on clashes between society and technology with other researchers and other universities,” says Barker Beyrle.
Using technology to revolutionize the trucking industry, and more
Jinyan Zang’s ongoing fascination with using technology to create change began in a Harvard classroom. His senior year, Zang ’13 took Sweeney’s “Privacy and Technology” course and never looked back. After graduation, he became a technology fellow at the Federal Trade Commission during Sweeney’s time in 2014 as its chief technology officer, working on data privacy policies and consumer protection issues. He returned with Sweeney to Harvard to pursue his doctorate in government and helped her roll out the Tech Science program in 2015.
Throughout his Harvard tenure Zang, now an IQSS associate, has worked on a range of Tech Science and Data Privacy Lab-related projects, including a 2021 study that found Facebook’s advertising algorithms can discriminate by race and ethnicity. Today, as the chief operating officer of Axle – a data platform helping streamline the trucking industry, created with Harvard graduate and Tech Science alum Dhruv Gupta ’20 – Zang thinks the Tech Science program is central to helping build a better world.
“It’s incredibly important, especially at a place like Harvard, to train the next generation of leaders to guide our technology, to be able to not just serve the interests of corporations, or technologists, but also the public interest values that we care about whether it's privacy, elections, voting rights, access to information, or the ability to distinguish misinformation from truthful information,” says Zang.
Going forward, Zang PhD ’21 sees the program having an even greater impact as artificial intelligence and other machine-learning systems continue to push the boundaries of technology and society. “More and more we're letting computers determine and make decisions, so it becomes even more important to ensure that centuries of laws, of debates, of policy decisions are not ignored or invalidated by technology,” Zang says. “The Tech Science program is perfectly positioned to help with that.”
In recent years, Harvard students affiliated with the program and the Data Privacy Lab have been taking on issues of voter suppression and algorithmic fairness. Those ongoing efforts known at VoteFlare and MyDataCan are housed at the Public Interest Tech Lab, an expansion of the Data Privacy Lab that is housed at HKS and that Sweeney calls “a bigger vision of the same thing.”
Looking back and planning ahead
The Data Privacy Lab’s origins date back to Sweeney’s tenure at Carnegie Mellon University where she taught for 13 years. She founded the Lab there in 2001, moving it to Cambridge a decade later when she joined Harvard fulltime. Initially focused on privacy-related concerns, soon it was investigating “discrimination and bias in algorithms, and ways to solve these vulnerabilities online,” says Sweeney. Like privacy, she added, “they are major ways in which technology has clashed with society, and we don't have remedies for them.” But she knows finding those remedies just got a little easier thanks to the gifts given in support of theDataMap and the Tech Science program which will help patients be better informed about who is sharing their health data and encourage cutting-edge research that will attempt to address some of society’s most pressing social and political challenges.
Looking back, Sweeney credits IQSS with helping both support her early efforts and sustain them today. “The journey could not have been made without IQSS,” she says. “They provided resources and infrastructure to help me leverage these important projects. They’ve just been amazing partners throughout the entire process, and I can’t wait to see what we do next.”
|
RELATED FEATUREData Highway: A Trailblazing Journey into Trucking |
