Description
Genomic testing has lead to a paradigm shift in our understanding and treatment of disease, with particularly noteworthy accomplishments in oncology. Recent advances in consumer genomics services such as 23andMe have empowered the patient to sequence their genome independent of their healthcare provider. In parallel, personal wearables [e.g. Garmin, FitBit] have become inexpensive and ubiquitous, providing information for personal health maintenance and activity monitoring. While patients are increasingly empowered with new information about their health, genome, and healthcare risks, there are also growing concerns about how people will access these services, how they will interpret and use the data, and how data will be protected from nefarious uses. As these products and services expand, it is critical that informaticians be amongst the most informed in the healthcare ecosystem. The learning objectives for this discussion are: 1) understand risks and benefits to patients and providers for the different approaches for generating personalized genomics data, 2) learn about strategies for engaging patients and consumers in research and return of results in a patient-driven genomic era, and 3) learn data governance, privacy, and data standards required for these large-scale projects.
Learning Objective: 1) understand risks and benefits to patients and providers for the different approaches for generating personalized genomics data
2) learn about strategies for engaging patients and consumers in research and return of results in a patient-driven genomic era
3) learn data governance, privacy, and data standards required for these large-scale projects
Authors:
Erin Crowgey (Presenter)
Nemours
Matthew Breitenstein (Presenter)
University of Pennsylvania
Theresa Walunas (Presenter)
Northwesterm
Samuel Volchenboum (Presenter)
University of Chicago
Presentation Materials: