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Returning Results In The Genomic Era: Initial Experiences Of The Emerge Network, Ellen W. Clayton, Georgia L. Wiesner, Alanna K. Rahm, Et Al.
Returning Results In The Genomic Era: Initial Experiences Of The Emerge Network, Ellen W. Clayton, Georgia L. Wiesner, Alanna K. Rahm, Et Al.
Vanderbilt Law School Faculty Publications
A goal of the 3rd phase of the Electronic Medical Records and Genomics (eMERGE3) Network was to examine the return of results (RoR) of actionable variants in more than 100 genes to consenting participants and their healthcare providers. Each of the 10 eMERGE sites developed plans for three essential elements of the RoR process: Disclosure to the participant, notification of the health care provider, and integration of results into the electronic health record (EHR). Procedures and protocols around these three elements were adapted as appropriate to individual site requirements and limitations. Detailed information about the RoR procedures at each site …
Patients And Biobanks, Ellen Wright Clayton
Patients And Biobanks, Ellen Wright Clayton
Vanderbilt Law School Faculty Publications
The question about the privacy of medical information can be stated simply: To what extent can and should patients control what the medical record contains and who has access to it and for what purposes? Patients often have apparently conflicting views on this subject. On the one hand, we, as patients, say that we prize privacy and that we fear that information will be used to harm us. On the other hand, we value the benefits that come from improved communication among providers, such as having our visits covered by third party payers and advances in medical science, which often …