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