Thursday, October 18, 2012

I Wonder How The NEHRS / PCEHR Would Address This Tricky Little One.

The following appeared a few days ago. Fits into to bigger story of what we will needs in EHRs a decade from now - if not sooner.

Incorporate DNA sequencing data into EHRs, ethics panel says

October 12, 2012 | By Julie Bird
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."
To learn more:
- read the full
- see a report
Full article here:
I can’t see this sort of material would ever be appropriate for a shared EHR - rather than in the hands of a dedicated practitioner with responsibility for patient care. It also makes it clear the PCEHR is an old style of idea which just won’t support clinical practice into the future in the ways we will need.