Could Genomes Be Used to Create a Universal Health Record Based on Real Time Patient Consent

Background There’s been tremendous investment in both molecular diagnostics and electronic health records that will soon be ready for market. However, there are significant regulatory, privacy and user education/adoption barriers that need to be addressed for personalized medicine to succeed. During this talk we’ll demonstrate DNA Guide’s solution for navigating genetic regulation, privacy and ease of use and show how genetic data can create a patient centered universal health record based on real time consent. Objective The genome as a data file format represents a digital human being, and as such, will follow the same patterns of user generated content as other digital technologies. By exploring patterns of data usage on the web, we’ll can identify how the proper use of technology can provide a mechanism for patient privacy and help facilitate the adoption of personalized medicine. Method By using roughly 200 values from within a person’s genome it is possible to create a unique identifier which could be used for security as well as provide the foundation for a universal health record. Furthermore, by using geographic information systems technology to map the genome, we’re able to convert each DNA base pair into a programmable object and manage both interpretation and access down to the base pair level, automating genetic interpretation. Finally, by mapping annotation with a rating for quality of science, medical utility and viewing risk – we can enable the flow of personalized medicine information from the lab, to the physician and patient with the proper level of guidance offered the moment a user goes to access any part of the genome. Results/Findings By observing the history of the web, we can see a pattern with user-generated content flows freely through self-organizing exchanges of information with large platforms emerging rapidly and disrupting both established industries and institutions. We can expect genetic and health data to follow the same pattern of usage on the web, with the personal genome, ultimately emerging as the foundation for a universal health record capable of offering real time consent. Conclusion The advent of low cost genomes combined with the digitization of health will create a deluge of personal biological data. Before long, a person’s health record will likely contain a map of their body for organizing this information with their user account information derived from the values in their DNA. It is both possible and desirable that individuals be given the option to choose a trusted registrar for their biological datasets to create a type of biological based domain service for managing this data. Health IT professions and policy makers might want to begin contemplate a future when low costs genomes will cause the web to evolve into a biological network based on self-organizing genomes with real time consent. []