Executive Summary
Bioinformatics and Data Management
The NBN should support open research access for the scientific community and enable searches
of the databases via the Internet. To support the enhanced research capabilities of the NBN,
bioinformatics platforms should incorporate computational analysis tools. At the same time, it
should protect privacy and confidentiality of biospecimen donors. The NBN informatics strategy
should include, whenever possible, existing vocabularies and common data elements. The
architecture should have the ability to scale as the volume of data increases, and to adapt as new
datasets emerge. To the extent possible, the NBN data architecture would build upon best
practices from existing repositories and other genomic-based research resources. Development
and implementation will start with a centralized database, and then move to a more
decentralized, yet interconnected model as the system matures, capabilities are strengthened, and
requirements clarified.
Recommendation 4. While recommendations about the general architecture and common
data elements require broad input, to maximize efficiency, a central architect should be
designated to build and manage the bioinformatics infrastructure.
It is proposed that this central architect have authority over project personnel, budget, design,
and system architecture, and be accountable to the governing principles of the NBN. Critical
benchmarks of success for the NBN data system include ease of data entry and retrieval, highly
responsive user support, and commitment to NBN Quality Assurance (see also Governance and
Business Models).
Recommendation 5. The NBN bioinformatics system should be standards based (e.g.,
Systemized Nomenclature of Medicine, Health Level Seven, or Minimum Information
About a Microarray Experiment for Data; Internet for communications) to enable data
and information exchange among system components and the researchers who use them.
In designing the bioinformatics system, a standards-based approach will allow flexibility to
employ individualized approaches, while reducing the difficulty involved in developing a
comprehensive system that links diverse components of the NBN. The NBN should not impose
specific requirements for databases or hardware systems by the operational units.
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