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
Currently Skimming:
6 Issues for NHANES
6 Issues for NHANES
Pages 35-44
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From page 35... ...
Presenters in this session included Sharon Kardia, University of Michigan; Marc Williams, Geisinger Health System Genomic Medicine Institute; Muin Khoury, Centers for Disease Control and Prevention; and Laura Beskow, Duke University. Adam Berger, Institute of Medicine, chaired this session.
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From page 36... ...
DETERMINING WHAT DATA ARE RETURNABLE Marc Williams reported on work by the Geisinger Health System, a large integrated health care delivery system. Geisinger has a biorepository called MyCode that is a tool for patient engagement and ongoing participation research activities.
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From page 37... ...
Williams pointed out that nonactionable variants occur in genes that are associated with clinical conditions, but for which there is no treatment or change in care available, such as ApoE4 and Huntington's disease. In general, the genetics community thinks that information about nonactionable variants that are found incidentally rather than as part of a diagnostic testing protocol should not generally be returned, Williams asserted, because doing so would create concern in patients, would provide no benefit, and could increase health care costs.
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From page 38... ...
Khoury addressed the potential evidentiary basis for return of results and described ongoing work at the CDC that seeks to develop an evidencebased approach for clinical and public health practice. The Evaluation of Genomic Applications in Practice and Prevention Initiative (EGAPP)
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From page 39... ...
From the audience, Jeffrey Botkin raised a policy question about how to define clinical utility. Actionability is a key word, he said, but there is a huge difference between what is theoretically actionable and what might be recommended that people do with information versus what people actually do and how that impacts morbidity and mortality.
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From page 40... ...
(2013) presented in Muin Khoury's presentation at the Workshop on Guidelines for Returning Individual Results from Genome Research Using Population-Based Banked Specimens, February 10-11, 2014, National Re search Council, Washington, DC.
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From page 41... ...
adults about a proposed national genetic cohort study. One of the findings of the study was that 9 in 10 people agreed they would want to know all of their individual research results (Kaufman et al., 2008)
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From page 42... ...
Those are big decisions that may not be medically actionable, but they are certainly actionable. Williams commented further that there is traditional medical actionability, but there is also reproductive decision making, life planning, and other things that some characterize as personal utility.
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From page 43... ...
This extends to research settings as well, he suggested.
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