Institute:Office of National Coordinator (ONC) Workforce Training Curriculum
Component:The Culture of Health Care
Unit:Privacy, Confidentiality, and Security
Lecture:Definitions of privacy, confidentiality, and security
Slide content:Related Issues for Medical Privacy Who owns medical information? Complex; varies from state to state ( http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison ) May have economic value, which should be shared back to patient (Hall & Shulman, 2009; Rodwin , 2009) Compelled disclosures (Rothstein & Talbott , 2006) We are often compelled to disclose information for nonclinical care reasons Ultimate personal identifier may be individuals genome (McGuire & Gibbs, 2006) Even de-identified data may compromise privacy ( Malin & Sweeney, 2005) Genome of family members can identify siblings ( Cassa et al., 2008) Data from genome-wide association studies can reveal individual-level information (Lumley & Rice, 2010) 18
Slide notes:There are a number of related issues for medical privacy. Ownership of health information is complex and varies from state to state. Additionally, court decisions may relate to health information in one state but not apply to health information from other states. In general, the person or organization that holds the record is considered to be the owner of the information. Once health information has been given to a provider or organization, patients have rights to access and copy their health information but are not considered to own the information. A comparison of state policies on medical record ownership is available at www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison. For example, if an office practice or hospital had paper charts, and had bought and owned the paper the charts were printed on, it was presumed that the practice or hospital owned the information on that paper. However, in the electronic era, information moves freely across networks from one system to another, and ownership of that information becomes less clear. As the amount of information increases, theres an increased economic value to health care providers, pharmaceutical companies, insurance companies, research institutions, and others who may want to use that data for various purposes. The article by Rodwin , in particular, argues that when there is an economic advantage gained by the use of that information, then at least some of that gain should be shared back to the patient. Another concern is compelled disclosures of informationthat is, even though laws and regulations may highly protect information, individuals may sometimes be compelled to disclose information for nonclinical care reasons in the health care setting. Employers, insurance companies, and even government agencies sometimes require people to sign authorizations releasing their health information for various purposes. Health care providers need to be aware of requiring individuals to disclose information that is not really being used for health-related activities. Another growing issue concerns the human genome [ jee -nohm ], which may be a persons ultimate personal identifier. A persons genome is what makes each person an individual. Individual genes and the variation that they have from others genes are unequivocally unique to each person. Health information can be de-identified, but with genomic information, individuals may be easily identifiable. Access to the genomic information manifests itself in a number of ways. For example, a persons genome can be identified by the genomic [ ji- noh -mik ] information in his or her siblings. There are a growing number of genome-wide association studies that attempt to associate variation in an individuals genome with different diseases. Theres actually a requirement for researchers to put this data in public databanks, although usually the individual personal information is protected and is available only to the researchers, who can legitimately access it. It is not too difficult to identify an individual from genomic data, so as research moves forward with genomics and personalized medicine, more privacy issues will come to the fore. The Genetic Information Nondiscrimination Act of 2008 was enacted as a mechanism to ensure that genetic information is not used to discriminate against an individual in health insurance and employment settings. 18