A Qualitative Study of Anticipated Decision Making around Type 2 Diabetes Genetic Testing: the Role of Scientifically Concordant and Discordant Expectations
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Type 2 diabetes mellitus (T2DM) genetic testing is undergoing clinical trials to measure the efficacy of genetic counseling for behavior-based risk reduction. The expectations patients bring to the testing process may play an important role in individual outcomes. We conducted a qualitative exploration of anticipated decision-making and expectations around T2DM genetic testing. Semi-structured interviews were completed with Mexican Americans (n = 34), non-Hispanic Black Americans (n = 39), and non-Hispanic White Americans (n = 39) at risk for T2DM. Transcripts were analyzed for themes. Most participants would accept T2DM genetic testing in order to motivate risk-reducing behaviors or apprise family members of their risk. Participants who would decline testing wished to avoid emotional distress or believed the test would not reveal new risk information. Non-Hispanic Whites and those with college education declined genetic testing more often than other groups. Those without college education were more likely to have testing expectations that were discordant with current science, such as conflating genetic testing with common ‘blood tests.’ Understanding expectations and decision-making factors around T2DM genetic testing will better prepare healthcare professionals to counsel their patients. This may lead to a higher efficacy of T2DM genetic testing and counseling.
KeywordsDiabetes Genetic testing Decision-making Qualitative research
The authors thank Hannah M. Curtis and Alix H. Bernholtz for assistance with qualitative coding, and Ji Qi for help with data management. This project was funded by the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health under award number R01DK083347 (to T.E.J.). Additional support was provided by the Michigan Center for Diabetes Translational Research under award number P30DK092926 from the National Institute of Diabetes and Digestive and Kidney Diseases. The content of this publication is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Compliance with Ethical Standards
Conflict of Interest
Alicia Carmichael, Bailey Hulswit, Emily Moe, Toby Jayaratne, and Beverly Yashar declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
No animal studies were carried out by the authors for this article.
- Becker, F., van El, C. G., Ibarreta, D., Zika, E., Hogarth, S., Borry, P., Cambon-Thomsen, A., Cassiman, J.J., Evers-Kiebooms, G., Hodgson, S., Janssens, A.C., Kaariainen, H., Krawczak, M., Kristoffersson, U., Lubinski, J., Patch, C., Penchaszadeh, V.B., Read, A., Rogowski, W., Sequeiros, J., Tranebjaerg, L., van Langen, I.M., Wallace, H., Zimmern, R., Schmidtke, J., & Cornel, M.C. (2011). Genetic testing and common disorders in a public health framework: how to assess relevance and possibilities. Background document to the ESHG recommendations on genetic testing and common disorders. European Journal of Human Genetics, 19, S6-S44.Google Scholar
- Cardona-Morrell, M., Rychetnik, L., Morrell, S. L., Espinel, P. T., & Bauman, A. (2010). Reduction of diabetes risk in routine clinical practice: are physical activity and nutrition interventions feasible and are the outcomes from reference trials replicable? A systematic review and meta-analysis. BMC Public Health, 10(653), 1–17.Google Scholar
- Centre d’Etudes et de Recherche pour l’Intensification du Traitement du Diabète. (2012). Validation of a Predictive Risk Equation for Type 2 Diabetes in Families With Risk (DESCENDANCE). In: ClinicalTrials.gov. Bethesda (MD): - [cited 2016 Feb 2]. Available from: http://clinicaltrials.gov/show/study/NCT01727349 NLM Identifier: NCT01727349.
- David Grant U.S. Air Force Medical Center, Duke University. (2013). Genetic risk and health coaching for type 2 diabetes and coronary heart disease. In: ClinicalTrials.gov. Bethesda (MD): - [cited 2016 Feb 2]. Available from: https://clinicaltrials.gov/ct2/show/study/NCT01884545 NLM Identifier: NCT01884545.
- de Miguel-Yanes, J. M., Shrader, P., Pencina, M. J., Fox, C. S., Manning, A. K., Grant, R. W., Dupuis, J., Florez, J. C., D’Agostino, R. B., Cupples, L. A., & Meigs, J. B. (2011). Genetic risk reclassification for type 2 diabetes by age below or above 50 years using 40 type 2 diabetes risk single nucleotide polymorphisms. Diabetes Care, 34, 121–125.CrossRefPubMedGoogle Scholar
- Grant, R. W., O’Brien, K. E., Waxler, J. L., Vassy, J. L., Delahanty, L. M., Bissett, L. G., Green, R. C., Stember, K. G., Guiducci, C., Park, E. R., Florez, J. C., & Meigs, J. B. (2013). Personalized genetic risk counseling to motivate diabetes prevention: a randomized trial. Diabetes Care, 36, 13–19.CrossRefPubMedGoogle Scholar
- International Diabetes Federation. (2013). IDF Diabetes Atlas, 6th edn. Brussels, Belgium: International Diabetes Federation; Retrieved from: http://www.idf.org/diabetesatlas.
- Kuczmarski, M. F., Kuczmarski, R. J., & Najjar, M. (2001). Effects of age on validity of self-reported height, weight, and body mass index: findings from the third National Health and nutrition examination survey, 1988–1994. Journal of the American Dietetic Association, 101, 28–34.Google Scholar
- McAndrew, L. M., Musumeci-Szabó, T. J., Mora, P. A., Vileikyte, L., Burns, E., Halm, E. A., Leventhal, E. A., & Leventhal, H. (2008). Using the common sense model to design interventions for the prevention and management of chronic illness threats: From description to process. British Journal of Health Psychology, 12, 195–204.CrossRefGoogle Scholar
- Meigs, J. B., Shrader, P., Sullivan, L. M., McAteer, J. B., Fox, C. S., Dupuis, J., Manning, A. K., Florez, J. C., Wilson, P. W. F., D’Agostino, R. B., & Cupples, L. A. (2008). Genotype score in addition to common risk factors for prediction of type 2 diabetes. The New England Journal of Medicine, 359, 2208–2219.CrossRefPubMedPubMedCentralGoogle Scholar
- Nishigaki, M., Sato, E., Ochiai, R., Shibayama, T., & Kazuma, K. (2011). Impact of a booklet about diabetes genetic susceptibility and its prevention on attitudes towards prevention and perceived behavioral change in patients with type 2 diabetes and their offspring. Advances in Preventive Medicine, 2011, 1–7.Google Scholar
- Nishigaki, M., Tokunaga-Nakawatase, Y., Nishida, J., & Kazuma, K. (2014). The effect of genetic counseling for adult offspring of patients with type 2 diabetes on attitudes toward diabetes and its heredity: a randomized controlled trial. Journal of Genetic Counseling, 23, 762–769.CrossRefPubMedGoogle Scholar
- Tessaro, I., Smith, S. L., & Rye, S. (2005). Knowledge and perceptions of diabetes in an Appalachian population. Preventing Chronic Disease, 2(2), 1–9.Google Scholar
- U.S. Department of Health and Human Services. (2008). 2008 Physical Activity Guidelines for Americans. (Report No. U0036). Retrieved from http://www.health.gov/paguidelines/pdf/paguide.pdf.
- Vassy, J. L., O’Brien, K. E., Waxler, J. L., Park, E. R., Delahanty, L. M., Florez, J. C., Meigs, J. B., & Grant, R. W. (2012). Impact of literacy and numeracy on motivation for behavior change after diabetes genetic risk testing. Medical Decision Making, 32, 606–615.CrossRefPubMedPubMedCentralGoogle Scholar
- Voils, C. I., Coffman, C. J., Grubber, J., Edelman, D., Sadeghpour, A., Maciejewski, M. L., Bolton, J., Cho, A., Ginsburg, G. S., & Yancy Jr., W. S. (2015). Does type 2 diabetes genetic testing and counseling reduce modifiable risk factors? A randomized controlled trial of veterans. Journal of General Internal Medicine, 30, 1591–1598.CrossRefPubMedPubMedCentralGoogle Scholar
- Waxler, J. L., O’Brien, K. E., Delahanty, L. M., Meigs, J. B., Florez, J. C., Park, E. R., Pober, B. R., & Grant, R. W. (2012). Genetic counseling as a tool for type 2 diabetes prevention: a genetic counseling framework for common polygenetic disorders. Journal of Genetic Counseling, 21, 684–691.CrossRefPubMedGoogle Scholar
- WHO Department of Health Statistics and Information Systems. (2013). Global health estimates summary tables: YLLs by cause, Age, and sex. In: GHE_YLL_Global_2000_2011.xls, editor. Geneva, Switzerland: World Health Organization.Google Scholar