Geisinger Health System Launches Genomic Patient Portal with NIH
Pennsylvania-based Geisinger Health System recently announced the creation of an online patient portal that allows patients to enter the results of genetic testing. Those results will be fed into the Clinical Genome (ClinGen) Resource, which is a National Institutes of Health (NIH)-funded project that gathers genetic testing data.
According to Geisinger, its “online portal bolsters the ClinGen laboratory database by coupling patient-entered health information with clinical laboratory data for a comprehensive database that helps clinicians and researchers better understand genetic variants and their impact on health,” investigators said in a statement.
The patient portal and genomic data repository project are pitched as a means of empowering patients to understand the power of the human genome, and as a way of improving clinical care for genetic diseases. But health information management (HIM) professionals play a role in keeping that data secure and private and in compliance with HIPAA.
Last year, AHIMA submitted comments to the Genomic Data Sharing (GDS) Policy Team, which is part of the NIH, on the “Draft NIH Genomic Data Sharing Policy.”
AHIMA officials recommended to the NIH team that “investigators who elect to submit data to a non-NIH-designated data repository should confirm that the appropriate data security, confidentiality, and privacy measures are in place, we recommend that NIH define the process for this confirmation. In addition, AHIMA believes that the GDS should specifically articulate and include the appropriate requirements for information governance, data security, confidentiality, and privacy.”
Some of those security measures include de-identifying the data, making sure patient participants give informed consent acknowledging how their information will be used, and making participants “aware that privacy implications may exist that extend beyond themselves to family members or those who share their genome, including parents, siblings, children, adoptees, birth parents, sperm donors, and others.”