Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider.
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.
McGuire
Amy L
AL
From the 1Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA. amcguire@bcm.edu
Fisher
Rebecca
R
Cusenza
Paul
P
Hudson
Kathy
K
Rothstein
Mark A
MA
McGraw
Deven
D
Matteson
Stephen
S
Glaser
John
J
Henley
Douglas E
DE
D016494:Computer Security; D003219:Confidentiality; D030661:Genetic Privacy / Q000592:standards* / Q000639:trends; D005820:Genetic Testing; D006291:Health Policy; D006801:Humans; D016347:Medical Records Systems, Computerized / Q000592:standards*; D010548:Personal Health Services / Q000592:standards*; D014481:United States