Speaker Profile

President and CEO, Genetic Alliance

Sharon Terry is President and CEO of the Genetic Alliance, a network transforming health by promoting openness and is founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). Her memberships and advisories include the International Rare Disease Research Consortium and the Institute of Medicine Science and Policy Board. She was instrumental in the passage of the Genetic Information Nondiscrimination Act. Among other awards she received was the Clinical Research Forum and Foundation’s Annual Award for Leadership in Public Advocacy in 2011.

Session Abstract – PMWC 2017 Silicon Valley

Session Synopsis: Widespread data sharing will radically accelerate precision medicine, making discovery and treatment more efficient. However, we must be mindful of the rights of patients to access their data and control its use and distribution. Respecting and enforcing these rights — including the right to privacy — will turn patients into partners and provide an incentive for even broader data sharing.

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