What’s Mine Is Mine and What’s Yours Is Mine: Data Ownership and Sovereignty  - The Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard

Topic: What’s Mine Is Mine and What’s Yours Is Mine: Data Ownership and Sovereignty

Abstract: As big data and AI become more widespread, concerns about data privacy and security have intensified, with many countries restricting access to their citizens’ data (and, in some settings, to data stored in those countries, regardless of citizenship). International ethical guidelines, such as the Declaration of Taipei, state that individuals are entitled to control the use of their personal data. But most people fail to appreciate how much of their data is already publicly available, how much of their data they can no longer control, and how extensive their digital footprint is. When they do learn, individuals feel excluded from decisions about their information and express the desire to determine how their data is accessed and used. Are data ownership, consent, and permissions to control one’s existing data still realistic? Are there other ways to demonstrate respect when obtaining consent is not possible? Are there data governance models that can provide oversight for participant concerns or wishes?  What actions, beyond consent, should be taken to respect or benefit the participants who contributed their data?

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