Confidentiality,privacy, and security of genetic and genomic test information in electronic health records: points to consider |
| |
| Affiliation: | 1. Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas;;2. Patient advocate, Oakton, Virginia;;3. Entrepreneur, McLean, Virginia;;4. The Genetics and Public Policy Center, The Johns Hopkins University, Washington, DC;;5. Institute for Bioethics, Health Policy and Law, University of Louisville, School of Medicine, Louisville, Kentucky;;6. National Partnership for Women and Families, Washington, DC;;7. Global Research and Development, Pfizer Inc, New York, New York;;8. Partners Health Care, Boston, Massachusetts;;9. American Academy of Family Physicians, Leawood, Kansas. |
| |
| Abstract: | 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 exceptionalism”; 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. |
| |
| Keywords: | |
| 本文献已被 ScienceDirect 等数据库收录！ |
|
