Journal
GENETICS IN MEDICINE
Volume 10, Issue 7, Pages 495-499Publisher
NATURE PUBLISHING GROUP
DOI: 10.1097/GIM.0b013e31817a8aaa
Keywords
genetics; policy; ethics; electronic health record; privacy; confidentiality; security; genetic test
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As clinical genetics evolves, and we embark down the path toward more personalized and effective health care, the amount, detail, and complexity of genetic/genomic test information within the electronic health record will increase. This information should be appropriately protected to secure the trust of patients and to support interoperable electronic health information exchange. This article discusses characteristics of genetic/genomic, test information, including predictive capability, immutability, and uniqueness, which should be considered when developing policies about information protection. Issues related to genetic exceptional ism; i.e., whether genetic/genomic test information should be treated differently from other medical information for purposes of data access and permissible use, are also considered. These discussions can help guide policy that will facilitate the biological and clinical resource development to support the introduction of this information into health care.
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