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:


All human genomic information produced at large-scale sequencing centres should be freely available and in the public domain, in order to encourage research and development and to maximize its benefit to society.b


At the same time, other forces have had the effect of restricting access to genomics data, including:

  • The need to protect patient or individual privacy;

  • The principal investigator’s desire to maintain research advantage;

  • The danger of misuse (e.g., of virus sequences);

  • A profit motive (for data with potential commercial value);

  • The tendency to “publish and forget” used data, especially supplementary data.

Committee on Issues in the Transborder Flow of Scientific Data stated in its report Bits of Power: Issues in Global Access to Scientific Data, “The value of data lies in their use.”2

The norms and traditions of research reflect the value of openness. Researchers receive intellectual credit for their work and recognition from their peers—and perhaps from the broader community of researchers and the public—when they publish their results and share the data on which those results are based. Some

2

National Research Council. 1997. Bits of Power: Issues in Global Access to Scientific Data. Washington, DC: National Academy Press.



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