Skip to main content
SpringerLink
Log in

A Qualitative Study of Anticipated Decision Making around Type 2 Diabetes Genetic Testing: the Role of Scientifically Concordant and Discordant Expectations

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Almgren, P., Lehtovirta, M., Isomaa, B., Sarelin, L., Taskinen, M. R., Lyssenko, V., Tuomi, T., & Groop, L. (2011). Heritability and familiality of type 2 diabetes and related quantitative traits in the Botnia study. Diabetologia, 54, 2811–2819.

    Article  CAS  PubMed  Google Scholar 

  • American Diabetes Association (2015). Standards of medical care in diabetes—2015. Diabetes Care, 38(Supplement 1), S5–S7.

    Article  Google Scholar 

  • 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.

  • Cameron, L. D., & Jago, L. (2008). Emotion regulation interventions: a common-sense model approach. British Journal of Health Psychology, 13, 215–221.

    Article  PubMed  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.

  • 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.

  • Christensen, K. D., Jayaratne, T. E., Roberts, J. S., Kardia, S. L., & Petty, E. M. (2010). Understandings of basic genetics in the United States: results from a national survey of black and white men and women. Public Health Genomics, 13, 467–476.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Grant, R. W., Hivert, M., Pandiscio, J. C., Florez, J. C., Nathan, D. M., & Meigs, J. B. (2009). The clinical application of genetic testing in type 2 diabetes: a patient and physician survey. Diabetologia, 52, 2299–2305.

    Article  CAS  PubMed  Google 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.

    Article  PubMed  Google Scholar 

  • Haga, S. B., Barry, W. T., Mills, R., Ginsburg, G. S., Svetkey, L., Sullivan, J., & Willard, H. F. (2013). Public knowledge of an attitudes toward genetics and genetic testing. Genetic Testing and Molecular Biomarkers, 17, 327–335.

    Article  PubMed  PubMed Central  Google Scholar 

  • Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288.

    Article  PubMed  Google Scholar 

  • International Diabetes Federation. (2013). IDF Diabetes Atlas, 6th edn. Brussels, Belgium: International Diabetes Federation; Retrieved from: http://www.idf.org/diabetesatlas.

  • Klitzman, R. L. (2010). Misunderstandings concerning genetics among patients confronting genetic disease. Journal of Genetic Counseling, 19, 430–446.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

  • Lanie, A. D., Jayaratne, T. E., Sheldon, J. P., Kardia, S. L., Anderson, E. S., Feldbaum, M., & Petty, E. M. (2004). Exploring the public understanding of basic genetic concepts. Journal of Genetic Counseling, 13, 305–320.

    Article  PubMed  PubMed Central  Google Scholar 

  • Lea, D. H., Kaphingst, K. A., Bowen, D., Lipkus, I., & Hadley, D. W. (2011). Communicating genetic and genomic information: health literacy and numeracy considerations. Public Health Genomics, 14, 279–289.

    Article  CAS  PubMed  Google Scholar 

  • Lombard, M., Snyder-Duch, J., & Bracken, C. C. (2002). Content analysis in mass communication: assessment and reporting of intercoder reliability. Human Communication Research, 28, 1468–2958.

    Article  Google Scholar 

  • MacQueen, K. M., McLellan, E., Kay, K., & Milstein, B. (1998). Codebook development for team-based qualitative analysis. Field Methods, 10, 31–36.

    Article  Google Scholar 

  • Markowitz, S. M., Park, E. R., Delahanty, L. M., O’Brien, K. E., & Grant, R. W. (2011). Perceived impact of diabetes genetic risk testing among patients at high phenotypic risk for type 2 diabetes. Diabetes Care, 34, 568–573.

    Article  PubMed  PubMed Central  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.

    Article  Google 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.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Mills, R., Powell, J., Barry, W., & Haga, S. B. (2015). Information-seeking and sharing behavior following genomic testing for diabetes risk. Journal of Genetic Counseling, 24, 58–66.

    Article  PubMed  Google Scholar 

  • Nishigaki, M., Kobayashi, K., Hitomi, T., Yokomura, T., Yokoyama, M., Seki, N., & Kazuma, K. (2007). Perception of offspring risk for type 2 diabetes among patients with type 2 diabetes and their adult offspring. Diabetes Care, 30, 3033–3034.

    Article  PubMed  Google 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.

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • O’Daniel, J. M. (2010). The prospect of genome-guided preventive medicine: a need and opportunity for genetic counselors. Journal of Genetic Counseling, 19, 315–327.

    Article  PubMed  Google Scholar 

  • Persky, S., Kaphingst, K. A., Condit, C. M., & McBride, C. M. (2007). Assessing hypothetical scenario methodology in genetic susceptibility testing analog studies: a quantitative review. Genetics in Medicine, 9, 727–738.

    Article  PubMed  Google Scholar 

  • Proove Bioscience, Inc. (2015). A Study of the Impact of Genetic Testing on Clinical Decision Making and Patient Care (REVOLUTION). In: ClinicalTrials.gov. Bethesda (MD): - [cited 2016 Feb 2]. Available from: http://clinicaltrials.gov/show/study/NCT02487888 NLM Identifier: NCT02487888.

  • Schellenberg, E. S., Dryden, D. M., Vandermeer, B., Ha, C., & Korownyk, C. (2013). Lifestyle interventions for patients with and at risk for type 2 diabetes: a systematic review and meta-analysis. Annals of Internal Medicine, 159, 543–551.

    Article  PubMed  Google 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.

  • 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., Donelan, K., Hivert, M. F., Green, R. C., & Grant, R. W. (2013). Genetic susceptibility testing for chronic disease and intention for behavior change in healthy young adults. Journal of Community Genetics, 4, 263–271.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google 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.

    Article  PubMed  PubMed Central  Google 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.

    Article  PubMed  Google Scholar 

  • Webb, T. L., & Sheeran, P. (2006). Does changing behavioral intentions engender bahaviour change? A meta-analysis of the experimental evidence. Psychological Bulletin, 132, 249–268.

    Article  PubMed  Google 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.

  • Wright, C. F., & Kroese, M. (2009). Evaluation of genetic tests for susceptibility to common complex diseases: why, when and how? Human Genetics, 127, 125–134.

    Article  PubMed  Google Scholar 

  • Yates, T., Davies, M., & Khunti, K. (2009). Preventing type 2 diabetes: Can we make the evidence work? Postgraduate Medicine Journal, 85, 475–480.

    Article  CAS  Google Scholar 

Download references

Acknowledgments

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.

Author information

Authors and Affiliations

  1. BioSocial Methods Collaborative, Research Center for Group Dynamics, Institute for Social Research, University of Michigan, 426 Thompson St, Ann Arbor, MI, 48109-1248, USA

    Alicia G. Carmichael

  2. Center for Molecular Medicine and Genetics, Wayne State University, Detroit, MI, USA

    Bailey B. Hulswit

  3. Genetics and Genomics Program, Children’s Hospital of Wisconsin, Milwaukee, WI, USA

    Emily J. Moe

  4. Department of Health Behavior and Health Education, School of Public Health, University of Michigan, Ann Arbor, MI, USA

    Toby Epstein Jayaratne

  5. Department of Human Genetics, University of Michigan, Ann Arbor, USA

    Beverly M. Yashar

Authors
  1. Alicia G. Carmichael
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Bailey B. Hulswit
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Emily J. Moe
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Toby Epstein Jayaratne
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Beverly M. Yashar
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Alicia G. Carmichael.

Ethics declarations

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.

Animal Studies

No animal studies were carried out by the authors for this article.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Carmichael, A.G., Hulswit, B.B., Moe, E.J. et al. A Qualitative Study of Anticipated Decision Making around Type 2 Diabetes Genetic Testing: the Role of Scientifically Concordant and Discordant Expectations. J Genet Counsel 26, 469–479 (2017). https://doi.org/10.1007/s10897-016-9999-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10897-016-9999-9

Keywords

Search

Navigation