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Access to Research Data in the 21st Century An Ongoing Dialogue Among Interested Parties: Report of a Workshop (2002) / Chapter Skim
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3 Public Access to Research Data Used in Rule Making
Pages 13-19

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From page 13...
... Should there be any limits on who may request research data?
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From page 14...
... As the NIH representative said, it "supports and forces scientific inquiry." Data sharing allows researchers to make maximum use of the very large investments needed to create complex data sets. Additionally, data sets are effective vehicles for teaching the next generation of scientists.
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From page 15...
... To facilitate compliance with the Shelby Amendment, the NIH has begun to encourage investigators to put data into public archives, data enclaves, and other mechanisms that allow access for research purposes. Furthermore, it has begun a review and revision of informed consent forms and research on human subject clearances and procedures.
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From page 16...
... First, application of the Shelby Amendment is "one-sided" because it applies only to federally funded research. "If access to the basic information upon which agencies make their decisions is the issue," he said, "there is no principled basis for saying that access should be available only when the research has been federally funded." For example, public advocacy groups do not have the right to use FOIA to demand the underlying data that may be present in industry-supported studies that have been submitted on a confidential basis to an agency to assert a claim of economic harm.
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From page 17...
... companies.ll He urged greater sharing of any data that is instrumental in setting public policy, and emphasized that industry is not 1lThe figure of $725 billion was drawn from the work of Thomas D Hopkins of the Rochester Institute of Technology and has been repeated in several contexts, including Senator Shelby's own article on the topic (see Senator Richard Shelby, "Public Access to Federally Funded Research Data," Harvard Journal on Legislation, Vol.
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From page 18...
... The Center's top priority is to ensure that high-quality data are used in setting regulatotal costs and benefits of all existing federal regulations to any degree of precision. There are at least two types of intractable problems: the "baseline problem," i.e., the difficulty of estimating how things would have been without the regulation, and the "apples and oranges problem," the common practice of determining total costs by adding together diverse individual studies.
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From page 19...
... Access to data is considered a prerequisite to assessing the quality of data used in regulatory decision making. In recent years, the federal government has concluded that the efforts of various groups to oppose federal regulations in their traditional form had virtually halted the federal regulatory process.
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Key Terms

  • regulatory process
  • data sharing
  • data quality
  • underlying data
  • quality legislation

  • total costs
  • agency receives
  • resources defense
  • regulatory effectiveness
  • confidential basis

  • omnibus appropriations
  • human cell
  • legitimate issues
  • environmental information
  • science underlying

  • risk analysis
  • genome project
  • effective vehicles
  • sharing data
  • appropriations act

  • regulation costs
  • currently exist
  • possibly limit
  • community believes
  • omb requirement

  • minimum thresholds
  • federal decision
  • scientific process
  • alert individuals
  • revised forms


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