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Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey Workshop Summary (2014) / Chapter Skim
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1 Introduction
Pages 1-4

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From page 1...
... Will their data be used for one research project and then destroyed, or will they be archived for secondary use? Sponsors of repeated cross-sectional surveys, such as NHANES, and of longitudinal surveys that follow panels of individuals over time, such as HRS, generally want to retain data for a wide range of secondary uses, many of which are not explicitly foreseen at the time of data collection.
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From page 2...
... In addition, it may be years between when a respondent provided a specimen and when that specimen was accessed for research, or when the knowledge base progressed to the point where a meaningful, reportable result could be obtained from the data. The National Center for Health Statistics and its Ethics Review Board have recognized the need to establish principles and best practices for reporting individual results from genomic research using archived specimens from NCHS surveys.
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From page 3...
... implement the reporting of results from genomic research using stored specimens; and (2) address informed consent for future data collection as well as for the use of banked specimens covered by prior informed consent agreements.
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From page 4...
... The workshop agenda will address such issues as: •  ow population surveys, such as the National Health and Nutrition Ex H amination Survey (NHANES) and others, should implement the reporting of results from genomic research using stored specimens, identifying options for reporting and their advantages and challenges.
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Key Terms

  • population surveys
  • returning individual
  • genome research
  • genetic specimens
  • biologic specimens

  • genomic research
  • informed consent
  • health statistics
  • using stored
  • future data

  • nutrition examination
  • examination survey
  • ethics review
  • banked specimens
  • dna results

  • review board
  • stored specimens
  • specimens covered
  • survey organizations
  • individual workshop

  • individual survey
  • genetic research
  • genetic studies
  • serious health
  • workshop titled

  • genomic studies
  • individual participants
  • storing genetic
  • research studies
  • returning dna


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