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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5 How Is NHANES Similar to/Different from Other Population-Based Studies?
5 How Is NHANES Similar to/Different from Other Population-Based Studies?
Pages 25-34
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From page 25... ...
population. Session presenters included Carolyn Tucker Halpern, University of North Carolina at Chapel Hill; David Weir, University of Michigan; Martha McClintock, University of Chicago; Robert Hauser, National Research Council; John Moye, National Institute of Child Health and Human Development; and Tina Hambuch, Illumina, with the session chaired by Mildred Cho, Stanford University.
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From page 26... ...
Add Health has returned some measurement information to participants over time, but to date it has not returned any bloodspot or genetic result data, largely because these data are viewed as experimental rather than clinicaltype data. According to Halpern, the main genetic-related issues that face this study involve questions about research versus clinical techniques, the lack of clinically actionable markers that have been used to date, the lack of guidance from researchers about balancing harm and good for different kinds of results delivered in different ways, the lack of study resources to answer respondents' questions and provide tailored counseling if needed, and deciding what information is important to whom, given that the strength of associations may vary substantially across sub-populations.
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From page 27... ...
The HRS has separate consents for the performance measures, the bloodspots, and the DNA. Consent rates in 2010 for dried blood and DNA exceeded 84 percent among white participants and ranged between 78 and 84 percent among Hispanic and African American respondents.
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From page 28... ...
She noted NSHAP is interested in looking at genes for the receptors of these hormones and at variants for the glucocorticoid receptor, which has been shown in the past year to be associated with vulnerability or resilience to stressors that then lead to cardiovascular disease. With regard to data reporting, McClintock said that there is limited return of nongenetic data, mainly well-established health indicators such as blood pressure and obesity and suggestions that participants consult a physician.
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From page 29... ...
The study has not collected a great deal in the way of biomarkers. He said items that might be thought of as biometric or biological include several measures of body mass index; facial characteristics such as attractiveness, smiles, and facial mass (from high school yearbooks)
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From page 30... ...
,6 now in its Vanguard or pilot testing phase, is a new national longitudinal study of environmental influences on children's health and development authorized by the Children's Health Act of 2000. John Moye explained that the Main Study will assess exposures and outcomes by following children to age 21.
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From page 31... ...
Some are of unknown clinical significance; for example, environmental chemicals with no recognized safety thresholds or genetic mutations not yet associated with particular health or other outcomes. The consensus, according to Moye, was that clinically significant and medically actionable results warranted return.
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From page 32... ...
Clinical tests tend to focus on genes that are deterministic; that is, monogenic diseases where there is high confidence that observed gene mutations are related to disease in a predictive way. There are other genes that are related to disease and have strong predictive value for the probability of developing disease, but are not absolute.
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From page 33... ...
Do the data recipients need to consent participants again? If a genome is donated for additional study, is a recipient institution required to obtain IRB input?
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