Pragmatic and Ethical Challenges of Incorporating the Genome into the Electronic Health Record
Abstract
Recent successes in the use of gene sequencing for patient care highlight the potential of genomic medicine. For genomics to become a part of usual care, pertinent elements of a patient’s genomic test must be communicated to the most appropriate care providers. Electronic health records may serve as a useful tool for storing and disseminating genomic data. Yet, the structure of existing EHRs and the nature of genomic data pose a number of pragmatic and ethical challenges in their integration. Through a review of the recent genome-EHR integration literature, we explore concrete examples of these challenges, categorized under four key questions: What data will we store? How will we store it? How will we use it? How will we protect it? We conclude that genome-EHR integration requires a rigorous, multi-faceted, and interdisciplinary approach of study. Problems facing the field are numerous, but few are intractable.
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