Since October 2012, more than 500 thought leaders in medicine, academia, and health care policy and administration have participated in the first-of-its-kind genomics symposium Understand Your Genome (UYG). Dawn Barry, senior director for Illumina’s New and Emerging Strategic Transformational business, discusses the UYG ‘movement’ and where it’s headed next.
What is “Understand Your Genome” (UYG) and what is its purpose?
UYG is both a symposium and a community designed to accelerate the field of precision medicine. In one sense, it is a collaborative community for industry’s thought leaders and foremost researchers, physicians and members of the extended whole genome sequencing (WGS) community. They are imagining and developing the tools, infrastructure, policies and education that are needed to understand and interpret genomic data towards integrating it into medical practice.
How many “UYGs” have you held?
We’ve held 10 events since the inaugural event in October 2012.
How is UYG different for other conferences about genomics and genomic medicine?
The symposium is unique in that is an experiential education, offering a guided engagement in the subject matter using one’s own genome as the case study. By personally experiencing genome sequencing, participants can leverage their own learnings in their respective professional settings.
What can attendees expect to learn at UYG?
Participants enjoy sessions and hand-on workshops that explore many practical and philosophical topics including social, legal and ethical considerations in the age of genomic medicine; genetic counseling; and clinical applications of WGS. Participants are “introduced” to their own genomes via their own data, delivered on iPads, enabling them to essentially learn more themselves. The learning continues after the event when participants join the UYG alumni group.
How many people have been sequenced and received their whole genome findings, as a result of UYG?
Approximately 500 people have been sequenced through UYG. The symposium, which involves the TruGenome Predisposition Screen, is the only source of its kind for clinically interpreted whole-genome information. We estimate that approximately 1,000 individuals have been whole-genome sequenced for personal wellness and/or citizen scientist motivations, but these individuals received raw data, not clinical interpretations and a “surfable” genome [on an iPad].
What were outcomes of the last UYG?
Our last UYG was in Qatar, as part of a broader national initiative for which the HiSeq X Ten was purchased. Professionals representing bioinformatics, genetic counseling, medical, regulatory, and ethics, to name only a few areas, gathered to discuss and align on future plans for local precision medicine. By experiencing UYG – which effectively afforded them to experience the Qatar infrastructure as a patient and put the science in their hands – they gained professional and personal insights that greatly influenced their planning.
What are some of the most noteworthy outcomes of all the UYGs?
The personal and professional awakenings are the true product we deliver. Our surveys show that the majority of doctors take their learnings into their practice of medicine as a result of UYG. Academics share that years of textbook learning comes to life when they see their own genome. Entrepreneurs have been inspired to invest in significant genomics-based ventures as a result of their engagement with UYG. Of course, when someone gains clarity on an undiagnosed health matter or a new perspective on managing their own wellness, it’s truly special.
Where do you envision UYG going? Will you continue to hold them and if so, how will they evolve?
UYG is a movement. An analogy is a ripple in the water. Our first ripple was with the genetics experts and enthusiastic participants, the traditional cutting edge types. The current ripple is with key opinion leaders in precision medicine across all professional disciplines. We recently held an invite-only gathering of approximately 50 key opinion leaders organized into teams across five key disciplines in precision medicine: 1) medical, 2) policy and regulation, 3) health administration and reimbursement, 4) big data delivery, and 5) provider and consumer engagement. This cross-disciplinary leadership community was gathered to drive innovative insights, integrated action plans, and new professional connections.
In 2015, we will be engaged with concierge and wellness practices, patient groups, insurance companies, and corporations involved in genomics. We will partner only with hosts who are motivated to bring UYG to their group/community and assume the program costs. We anticipate 16 events in 2015 and aim to produce over 1,000 genomes through these programs.
Is there continuing education/follow-up or a community for attendees to participate in after the event?
Yes, the ‘UYG Community’ was launched in November 2014 to continue the dialog post-event and to connect with other UYG alumni. UYG Community is a centralized web-based environment for education and discussion on genomics in health care. As part of the UYG Community, members have the ability to virtually interact with cross-discipline professionals that have a shared vision and mission of accelerating the adoption of whole genome sequencing as a clinical standard of care. By being part of a community that educates on, debates and discusses the opportunities and challenges of genomics-based medicine, members have the opportunity to align and drive precision medicine forward.