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Building Consensus, Identifying Needs
Pages 91-112

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From page 91...
... The meeting was held to assess what could be learned from the DMA's experience that might apply to implementation of a National Neural Circuitry Database. The second mechanism was the organization of four task forces composed of neuroscientists and computer information specialists.
From page 92...
... Individuals in charge of library resources, scientific database administration and design, and biomedical computer applications were especially valuable participants. Each subdiscipline of computer science—including database design, graphics, software development, networks, and hardware design—was represented.
From page 93...
... A graphically formatted synthesis could greatly facilitate understanding by making the information visual. In addition, archival brain material, such as that contained in the Yakovlev brain collection or the Comparative Mammalian Brain Collection, is not available at all in libraries; it could be made much more accessible through electronic networks and digital storage methods.
From page 94...
... Clinical neuroscientists were interested in the association of behaviors (e.g., tremor, memory dysfunctions, motor deficits) with particular brain regions.
From page 95...
... Their suggestions ranged from the establishment of linkages to existing genome databases to establishment of a brain-specific gene database. Although the examples given above are not exhaustive of all the suggestions made to the committee, they illustrate the necessity, in the long term, of including specific kinds of data at each level of the neural hierarchy and the appropriateness of starting with the structural anatomy of the brain.
From page 96...
... Another helpful feature for clinical neuroscientists and those involved in human imaging is the ability to compare different brain images by precise overlaying or co-registration of the images. Each brain differs from every other in its exact shape and internal organization.
From page 97...
... Participants advocated instead a complex of different kinds of databases, combined with electronic communication facilities and other on-line research tools, that would be interlinked to provide a resource for neuroscience research, education, and clinical applications. In addition, a number of investigators, citing the international character of science, called for the establishment of links to and relationships with computerized resources outside the United States.
From page 98...
... · Data banks would contain source or primary data, with references, that could be deposited by investigators coincident with publication of their research in standard scientific journals. Data banks would allow users to view the complete data set from experiments and might contribute to insights that would not be possible with standard journal formats.
From page 99...
... laboratories. Further, study staff asked 10 randomly chosen investigators from these groups if electronic communication facilities, including image transmission, would have helped their work.
From page 100...
... Currently, the most popular and most useful database design is the relational database; yet these databases cannot meet all of the eventual needs of the neuroscience community because they do not handle image data well and cannot display image and text data simultaneously. Object-oriented database management systems can handle image data, but they may not be widely available during the 1990s.
From page 101...
... In Task Force 4, participants were acquainted with recent advances by industry and academic research centers in designing software for fast searches of data within a database, including scientific databases. A consensus emerged through these discussions that computer scientists must work in close collaboration with neuroscientists to address the complex problems of software development.
From page 102...
... The final technical topic covered by the task forces was the development of technical standards for data exchange. The technical issues inherent in standards development are closely related to certain research issues and were of great concern to those who attended the committee's open hearings or contributed written commentary.
From page 103...
... In addition, some suggested that establishing liaisons and joint efforts between the neuroscience community and standards development groups (e.g., the standards working groups of the Internet Activities Board) would help to increase awareness in broader user communities of the special requirements of neuroscience data.
From page 104...
... Another risk involves the rights of human research subjects. The strict guidelines that protect the privacy and identity of human research subjects were developed before electronic networks and digital databases were in common use.
From page 105...
... Rather, identification of the risks and disincentives to sharing should be a priority, followed by formulation of policies to provide meaningful incentives and protections for investigators who share their data. Finally, formal attention should be paid throughout the development and use of computerized resources to the ethical issues involved in data sharing, including those pertaining to the privacy of human research subjects.
From page 106...
... One senior administrator, who had seen the development of computerized molecular modeling, expressed surprise about how long it took investigators to embrace the technology and begin to benefit from it (see also National Academy of Sciences, 1989~. Throughout the committee's activities, awareness of this kind of resistance brought repeated cautions that it would be unreasonable to expect everyone to view the establishment of computerized resources for neuroscience with the same enthusiasm.
From page 107...
... Motivating the suggestion of pilot projects was the belief that such an approach would allow "in-house" development, controlled by the eventual users of the tools and resources being examined. The importance of this kind of development was stressed by several task force members with backgrounds in database design and administration, as well as by the group that considered the Defense Mapping Agency's experience in developing computerized tools (Downs et al., 1990~.
From page 108...
... For example, most of the data from human imaging studies are in digital form; a pilot group working in that area could focus its work on the goals of standards development or data sharing. In contrast, a group whose data are largely in photographic or other nondigital forms might concentrate on developing digital data collection mechanisms.
From page 109...
... Coordination, oversight, and evaluation wi// be needed A key area of consensus among the task forces was that pilot projects required coordination and that oversight and evaluation mechanisms were crucial to the eventual implementation of a complex of computerized resources for neuroscience (see also National Academy of Sciences, 1989~. The experiences of the task force members involved with development of the genome databases underscored this need: each of the genome databases had developed independently, and interlinking these disparate systems was proving to be troublesome (Smith, 1990~.
From page 110...
... The necessity of building a base of experience from which to realize this goal was reinforced throughout the meetings and open hearings. Key aspects of this base of experience should include the involvement of neuroscientists with computer and information scientists in pilot projects, the coordination and oversight of individual pilot projects, and careful attention to the sociological and ethical issues inherent in the use of computerized resources for science.
From page 111...
... Yet the task force groups and open hearings included neuroscientists with a range of computer experience. As the various meetings progressed, most neuroscientists who had moderate to minimum computer experience (and were often initially skeptical about the value of computerized resources)
From page 112...
... Background paper prepared for Committee on a National Neural Circuitry Database, Institute of Medicine.


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