“If you are not at the table, you are on the menu”
This was was a sentiment echoed throughout Sharon Terry’s 2017 Don Rix Distinguished Keynote address, held on October 19th at the Vancouver Convention Centre. “Being at the table,” reflects the need for individuals, families and communities to be active participants in healthcare and research since people are experts in their own needs. Sharon’s story, as expressed in her keynote, explains her passion for bridging the gap between researcher and participant.
Sharon started her journey as “just a mom” with no official credentials in the biomedical realm until her children were diagnosed with the rare disorder pseudoxanthoma elasticum (PXE.) During the early stages of her children’s diagnosis, Sharon observed that researchers were not sharing data outside their institutions which limited the sharing of knowledge of this rare disease. Sharon was able to break down these barriers by becoming a citizen scientist and ultimately discovering and patenting the gene responsible for PXE, in order to make it freely available for others.
Today, Sharon is the President and CEO of Genetic Alliance, a non profit organization that advocates for health benefits in the accelerating field of genomics research, and is a major player in the science advocacy and policy space for rare genetic disorders. Over the past two decades, Sharon has led the landmark movement to address genetic conditions and advocates for participants’ rights to access their own data, and brought these issues to the attention of President Barack Obama through the work on the Precision Medicine Initiative. She serves in leadership roles for many collaborations focused on productively disrupting research and policy. Sharon led the coalition that fought for the passage of the Genetic Information Nondiscrimination Act in the United States.
Preceding the talk, roundtables were organized to share Sharon’s strong background and skill set with the Vancouver life sciences community. Roundtable topics included big data and data sharing, citizen science and engagement, and research driving policy in the area of precision health. These roundtables were strategically designed to give participants the opportunity to discuss, more deeply, the topics that are driving life sciences impacts today.
These discussions outlined important issues around data sharing – issues that we are grappling with here in BC. As learned from Sharon’s journey, citizens’ involvement is fundamental to fully understanding the needs, perspectives, and expectations of those most greatly impacted. Rules and regulations in healthcare are often created without consulting people outside the healthcare system and are often based on what scientists and regulators think the concerns are – not what citizens perceive them to be. Sharon also expressed that participants are much more willing to share their data than perhaps expected.
Data sharing and participant involvement in British Columbia are topics that Genome BC plans to monitor closely and discuss with the public through our GeneTalks program and ongoing research and industry forums. Social media is also a tool that helps connect to this discussion and the important work going on in BC in regards to participant centered research.
If you missed the 2017 Don Rix Distinguished keynote, a recording of the event is available on our YouTube channel.