SYSTEM, METHOD AND APPARATUS TO ENHANCE PRIVACY AND ENABLE BROAD SHARING OF BIOINFORMATIC DATA
摘要:
A system, method and apparatus for enabling individuals to determine their sharing, privacy, and data access preferences and conditions for disclosure of bioinformatic data, including whole genome sequence data over a network. In combination with a privacy preferences repository and policy repository for expressing legal and institutional criteria for accessing such information, a private access bureau enables such privacy requirements to be addressed while simultaneously enabling broad sharing of such data by and with properly authorized parties or applications. Through the use of various forms of metadata, encryption, and globally unique IDs that accompany such data elements, discrete segments of said data can be queried; and where permissible discovered, accessed, analyzed, viewed, linked with other health data and contact details, used, and/or exported based on pertinent privacy laws, institutional policies, and the individual's preferences that are associated with, and dynamically controlled through, an intuitive user interface.
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