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Storage of Genetic Data in an EMR!

Posted Oct 30 2008 3:22pm

The following question is posted on behalf of John Martin. John is currently doing his MSc in Healthcare Informatics in the area of genetic data at the University of Victoria, BC. This is perhaps a question that few have considered, but should get the creative thought processes going. Has anyone considered this issue? Share your thoughts by clicking on the 'Comments' link below.

'What are the issues and problems related to storing cancer genetic data in a EHR'?

This discussion can include, but certainly not limited to: Should only subsets of the genotype be stored or the whole genome? Are there any privacy issues that are specific to genetic data? Do we have concensus on what privacy policies we should apply and adhere to? How do we ensure semantic interoperability across various sources of genetic based information and users of this data? Where in the EHR should this data be placed and why? What do physicians need to see in terms of genetic data and reports? Do we need to plan to link genetic data to environmental data and other factors as part of a comphrehensive approach to patient care? How do we ensure the effective bridging between research and clinical systems?

To me, this is uncharted territory, but with the anticipated increase in molecluar tests being driven out of our genomic research labs, we need to discuss and debate these and likely other issues. I invite the physician community to help steer the debate in the appropriate direction. Anticipating a range of issues, I  would like to end up prioritizing issues.

I would also like to investigate opportunities to work with a physician that wishes to explore this with me I would like to communicate with them.

John Martin

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