Sharon Terry, President and CEO of Genetic Alliance

Sharon Terry

What I do

Sharon is President and CEO of Genetic Alliance, a civic enterprise engaging individuals, families and communities to transform health. Genetic Alliance works to provide programmes, products and tools for ordinary people to take charge of their health and to further research.


Sharon has a Master’s degree in Theology and co-founded PXE International, a research advocacy organisation for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. With her husband, she co-discovered the ABCC6 gene, and patented it to ensure ethical stewardship in 2000. She subsequently developed a diagnostic test and conducts clinical trials. She is the author of 150 peer-reviewed papers, of which 30 are clinical PXE studies.

She serves in a leadership role on many major international and national organisations, including the Precision Medicine Initiative Cohort Advisory Panel. She is on the editorial boards of several journals. She led the coalition that was instrumental in the passage of the Genetic Information Nondiscrimination Act.  She received an honorary doctorate from Iona College for her community engagement work in 2006; the Research! America Distinguished Organization Advocacy Award in 2009; and the Clinical Research Forum and Foundation’s Annual Award for Leadership in Public Advocacy in 2011. She is Co-PI of the PCORnet Coordinating Center and a member of the Blue Ribbon Panel’s Working Group on Enhanced Data Sharing for the Cancer Moonshot.

It is time to insert our voices into the decisions that are being made about our personal health, and the health systems with which we interact, and tailor them to what is best for us and our communities.
Sharon Terry
Tuesday, 2 May 2017