In the Classroom
Law and Policy Lab students tackle the legal and ethical challenges of data governance
Nineteen students from the Law School, Graduate School, and Sanford School of Public Policy participated in a role-playing simulation course this spring in which they navigated the legal, ethical, and technological challenges involved in the collection and sharing of sensitive health data for research purposes.
In Law & Policy Lab: Data Governance, each member of the class was assigned a role of either hospital administrator, researcher, or patient advocate. Six cohorts of JD, Master of Public Policy, and Master of Bioethics and Science Policy students then spent the semester designing data-sharing collaborations known as learning health networks to support the study of the long-term effects of COVID-19 infection, or “long COVID.” In the process, they tackled difficult data governance questions, such as what constitutes an appropriate funding mechanism for their networks, how best to protect patient confidentiality, what limits should be placed on how information is used, and even where and how to store it.
Health care is one of the few sectors of the U.S. economy in which the use of data is regulated, which makes it an ideal context for a simulation course, said instructor Keith Porcaro ’11. In health care, reusing and manipulating data are critical to achieving breakthroughs in research, but the act of collaboration can clash with medical privacy concerns.
Porcaro, the Reuben Everett Senior Lecturing Fellow and director of the Duke Center for Law and Technology’s Digital Governance Design Studio, encouraged the students to fully adopt the perspectives of people in the roles they were assigned to play. Inspired by board games, he developed “prototyping kits” to help students imagine what they wanted their collaboration to look like and translate those imaginings into something tangible.
Porcaro first asked students to consider a simple form granting parental consent for the collection of a child’s health information: Would they sign it? Are they engaged by it? What changes would make it more inviting? The answers informed the cohorts’ work, which included assembling a portfolio of key documents to support their collaborations. A priority of the course was to impart to students how decisions they make interact with existing systems of structural exclusion, either reinforcing the systemic impact or beginning to break it down.
“The course really allowed us to try to balance the practical realities of data governance with the freedom of being in a classroom and understanding how this could actually happen in the real world,” said Alan LeBlang ’24. “Balancing innovation with the hard realities of our very rigid systems and finding ways to be creative while also complying with legal and ethical realities has been very exciting.”
Through the Digital Governance Design Studio, which is funded by grants from the Ford Foundation and the Omidyar Network, Porcaro conducts research on decision support tools, such as advice-giving software, for organizations that meet critical needs. A former data governance consultant, he also helps organizations make decisions about and build processes governing the data and technology on which they depend. He has advised children’s hospitals on the design of learning health networks and is currently working with a group led by Massachusetts General Hospital to improve outcomes for bipolar disorder.
This fall, instead of a semester-long simulation on a single topic, Porcaro’s course consists of mini-simulations on a broader range of data governance topics: how companies protect data, how research collaborations form, and how large public datasets are built. He is also preparing a large course for the spring on algorithms and artificial intelligence to provide students with a foundational understanding of technology, as they imagine deploying it in practice or critiquing an application.
Ultimately, he believes the governance of other types of data beyond health information, such as environmental data and court data, is ripe for this model of teaching, and anticipates creating frameworks that other schools can use when designing simulation courses of their own. He hopes that students will come away with a greater appreciation for the role that lawyers can play in fostering innovative solutions, whether in data governance or other contexts.
“We are trying to show students that their legal skills can be used for other ends and help them to think of lawyers as facilitators,” Porcaro said. “With their skills, they can help different groups come together and find common ground with agreements that will last and adapt to changing circumstances. It’s a different perspective for lots of students.” — Andrew Park
