A presidential commission studying privacy issues related to more readily available DNA sequencing recommends integrating whole genome sequence data into health records for research purposes.
In a report issued Thursday, the Presidential Commission for the Study of Bioethical Issues said that electronically exchanging DNA sequencing data through standardized EHRs and infrastructure would provide more data to researchers for genome-wide analysis that can advance clinical care.
The report, "Privacy and Progress in Whole Genome Sequencing," recommends facilitating the exchange of information between genomic researchers and clinicians "while maintaining robust data protection safeguards," so DNA sequencing and health data can be combined in advancing genomic medicine.
"Current sequencing technologies and those in development are diverse and evolving, and standardization is a substantial challenge," the panel said. "Ongoing efforts are critical to achieving standards for ensuring the reliability of whole genome sequencing results, and facilitating the exchange and use of these data."
The panel makes clear that it wants to protect individuals' privacy and the right to informed consent to having their DNA collected "while promoting data access and sharing."
In a report summary, the commission notes it is urging federal and state governments to ensure a "consistent floor of protections" for DNA data "regardless of how they were obtained, the idea being to protect individual privacy by prohibiting sequencing without the patient's consent.
The commission noted that in about half the states, it is legal to surreptitiously collect a DNA sample from something as simple as a discarded coffee cup without getting a person's permission for testing.
Earlier this year, the UnitedHealth Group Center for Health Reform & Modernization issued a report noting that interoperable EHRs could alert clinicians when genomic testing might be called for when treating patients. Cincinnati Children's Hospital, for example, has a digital patient entry system alerting doctors to available genomic tests to help guide treatments.
"E-prescribing systems also could serve as platforms to alert providers that genetic test exist to determine the efficacy of particular treatment options," they added.
To learn more:
- read the full report
- see a report summary