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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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3 Perspectives on Returning Genome-Based Research Results
Pages 9-16

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From page 9...
... Henry Richardson began by discussing a "general duty of rescue," a basic obligation that is incumbent on all persons at all times if one can save someone else from dire peril easily without expending enormous amounts of energy or put 9
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From page 10...
... When researchers accept these waivers, they take on special responsibilities vis-à-vis research participants, Richardson asserted. In Richardson's view, the partial entrustment model explains why secondary researchers who use banked specimens, and hence have no direct contact with subjects, still may have obligations to report results (via some indirect chain)
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From page 11...
... It seems extraordinarily difficult to ask a group of researchers to identify pathogenic variants in an unselected population, stated Joffe. To illustrate the difficulties, he used data from a study of participants in ClinSeq, a large-scale medical sequencing clinical research pilot study that 2  See http://www.hhs.gov/ohrp/humansubjects/commonrule/ [June 2014]
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From page 12...
... ; incorrect penetrance estimates, especially because most data are based on variants from individuals with known phenotypes or family histories; and inaccurate annotation in reference databases. In Joffe's view, asking research teams to navigate these and related issues would be feasible only if a project were to prospectively specify the genes of interest and the particular variants within those genes, such that all of the curation work could be done prospectively and was not something that research teams had to confront as they dealt with participants and samples.
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From page 13...
... . Wolf mentioned governance innovation already going on via a number of consortia, including the GENEVA Committee on Incidental Findings,3 the eMERGE Network Return of Results Oversight Committee,4 the UK Biobank Ethics and Governance Council,5 and the Coriell Personalized Medicine Collaborative's Informed Cohort Oversight Board.6 Dynamic 3  The Gene Environment Association Studies (GENEVA)
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From page 14...
... is tasked and funded to collect data, return individual test results to the subjects, make summary statistics available to the public, and provide anonymized data to researchers. NCHS does very little research and is not funded to come up with findings or to determine whether something is actionable or not actionable.
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From page 15...
... Specifying NHANES responsibilities with regard to return of results and incidental findings is a crucial next step.
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Key Terms

  • genome research
  • informed consent
  • biobank research
  • study participants
  • research teams

  • secondary research
  • research site
  • primary research
  • returning results
  • genetic results

  • national human
  • secondary researchers
  • genetic findings
  • electronic medical
  • cautious approach

  • therapeutic efforts
  • ethical responsibilities
  • individual research
  • behavioral research
  • asking research

  • research pilot
  • expect research
  • identify genetic
  • genomic findings
  • consent procedure

  • require return
  • individual genetic
  • cover therapeutic
  • ing results
  • return individual


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