BOX 3-1
Access to Genomic Data
In biology, the culture of research and the applications of digital technologies have traditionally been heterogeneous, independent, and dispersed. However, the growth of interdisciplinary research, the advent of projects that have generated large volumes of data, and the invention of data-intensive devices such as DNA microarrays and high-throughput sequencers have highlighted the increasing importance of digitization of the biomedical sciences.a
In the field of genomics, strong forces have pushed in the direction of unrestricted access to data, including directives from funding agencies, requirements from journals that researchers submit data to public repositories, community expectations, and the development of powerful data-sharing systems such as PubMed. In the case of the human genome, for example, the desire by funding agencies, researchers, and the general public for public access to research data led the genomics research community to develop an ethic of unrestricted access. This ethic was formally adopted as the “Bermuda statement” in February 1996:
At the same time, other forces have had the effect of restricting access to genomics data, including:
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The need to protect patient or individual privacy;
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The principal investigator’s desire to maintain research advantage;
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The danger of misuse (e.g., of virus sequences);
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A profit motive (for data with potential commercial value);
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The tendency to “publish and forget” used data, especially supplementary data.
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