Genomic electronic health records: opportunities and challenges

In the May issue of Genome Medicine, Belmont and McGuire [1] make the case for a 'uniform electronic health record' (EHR) that includes both genotype and phenotype information. By uniform they mean a single data standard across different EHR databases and user interfaces, rather than a single database or a single user interface (this has been confirmed by personal communication with the authors).It is certainly true that a clearer picture of a patient's health is possible when their genotype data are combined with phenotype data. The quantity and quality of these data are improving, along with the analytical tools that allow us to interpret them. Patients, clinicians and researchers can all benefit from a better understanding of these data, and Belmont and McGuire's article [1] describes efforts in Europe and the USA to unify the datasets.However, other parties that would benefit from better understanding include public health officials, government bureaucrats, insurance companies and employers. And in some cases, there are conflicts of interest; for example, an insurance company could use genetic information to raise premiums or deny cover, whereas a patient might use the same information to seek increased cover when they learn of the risk for future diseases.There are ways to solve the conflicts of interest that can arise from the use and availability of patient data. First, as Belmont and McGuire [1] describe, efforts such as the Personal Genome Project [2] allow patients to opt in to fully disclose their genetic information for the benefit of researchers. PatientsLikeMe.com [3] has an openness policy alongside their privacy policy so that participants can agree to share all their data, and tens of thousands of people from around the world have already agreed to do so. The value to researchers is currently limited because the data are self-submitted rather than independently verified, but the proof that patients are willing to share their personal information is