Open Humans: Balancing social good with data privacy - Teaching note

Madeleine Ball, co-founder and Executive Director of Open Humans, received a tempting offer: a partnership with a major healthcare organization. For a nonprofit built on the radical idea of empowering individuals to share their personal health data for research, the deal promised legitimacy, funding, and scale. But it also carried risks: would accepting it compromise Open Humans’ independence, values, and trust with its community?

Launched in 2015 out of Harvard’s Personal Genome Project, Open Humans managed a platform where participants could voluntarily donate personal data - from their Fitbit logs to their own genomes - to medical research projects. Its model championed transparency, user autonomy, and grassroots collaboration, attracting thousands of contributors and numerous research projects. The goal was to make it easier for willing donors to contribute their data, while protecting their ownership, control, and safety.

The case examines the landscape of digitally-driven citizen science and data donation. With the first projects appearing in the 1990s, its popularity had risen with the COVID-19, which saw a multitiude of grassrots or government-backed projects come to the fore. Yet organizations such as Open Humans now faced mounting challenges: stricter privacy regulations (GDPR, HIPAA), rising donor skepticism about data misuse, and persistent issues of data quality and governance. Scaling the platform required resources, but resources often came with strings attached.