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Full-Text Articles in Privacy Law
The Data Trust Solution To Data Sharing Problems, Kimberly A. Houser, John W. Bagby
The Data Trust Solution To Data Sharing Problems, Kimberly A. Houser, John W. Bagby
Vanderbilt Journal of Entertainment & Technology Law
A small number of large companies hold most of the world’s data. Once in the hands of these companies, data subjects have little control over the use and sharing of their data. Additionally, this data is not generally available to small and medium enterprises or organizations who seek to use it for social good. A number of solutions have been proposed to limit Big Tech “power,” including antitrust actions and stricter privacy laws, but these measures are not likely to address both the oversharing and under-sharing of personal data. Although the data trust concept is being actively explored in the …
A Zebra's Trust: How Rare Disease Communities' Participation In Data Trusts' Governance Builds Trust And Drives Research, Samantha C. Smith
A Zebra's Trust: How Rare Disease Communities' Participation In Data Trusts' Governance Builds Trust And Drives Research, Samantha C. Smith
Vanderbilt Journal of Transnational Law
Data sharing plays an increasingly prominent role in society, but it remains a necessary component of rare disease research. Because rare diseases are--as the name indicates-- rare, researchers have only a small number of patients from whom to collect data, and the expense of cross-border data sharing to increase research data is significant. Nevertheless, the rise of artificial intelligence and precision medicine increases the need for usable rare disease data. Current legislation and regulations aimed at addressing rare diseases fall short in addressing these data sharing needs for rare disease research. While the European Union (EU) has invested in rare …