Abstract
This study aimed to identify predictors of adverse psychological experiences among direct-to-consumer (DTC) genomic test consumers. We performed a secondary analysis on data from the Scripps Genomic Health Initiative (SGHI), which studied 2037 individuals tested with commercially available tests yielding personalized risk estimates for 23 common, genetically complex diseases. As part of the original study, the participants completed baseline and follow-up survey measures assessing demographics, personal and family health history, attitudes toward genetic testing, anxiety (State-Trait Anxiety Inventory (STAI)), test-related distress (Impact of Event Scale—Revised (IES-R)), and reactions to receipt of results. To further describe the participants who had an adverse psychological outcome, this secondary analysis defined two different variables (“distress response” and “psychologically sensitive participants”) and examined their relationship to various demographic variables and other survey responses. One hundred thirty participants (6.4%) were defined as having a “distress response” to receipt of results based on changes in STAI and/or IES. Four hundred thirty-one participants (21.2%) were defined as being “psychologically sensitive” based on high STAI scores both pre- and post-receipt of results. For psychologically sensitive subjects, younger age emerged as a predictor (p < 0.0005). Family history and personal history were only significant predictors for Alzheimer’s disease in the psychologically sensitive participants (p = .03) and restless leg syndrome in those with a distress response (p = .03). Psychologically sensitive participants were more likely to indicate a number of pre-test concerns than were controls, but neither group of participants were any more likely to follow up with their physician or a free genetic counseling service after the return of results.
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Acknowledgements
The authors would like to thank Atul Butte for his contributions as a member of the research committee during the first author’s graduate training.
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Kelly Ormond was a paid consultant for Navigenics in 2007–2009, during which time the original SGHI data was obtained, but she was not involved in the creation or oversight of the original Bloss et al. (2011) study or its data in any way.
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Broady, K.M., Ormond, K.E., Topol, E.J. et al. Predictors of adverse psychological experiences surrounding genome-wide profiling for disease risk. J Community Genet 9, 217–225 (2018). https://doi.org/10.1007/s12687-017-0339-z
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DOI: https://doi.org/10.1007/s12687-017-0339-z