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Journal of Genetic Counseling

, Volume 26, Issue 3, pp 469–479 | Cite as

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

  • Alicia G. Carmichael
  • Bailey B. Hulswit
  • Emily J. Moe
  • Toby Epstein Jayaratne
  • Beverly M. Yashar
Original Research

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.

Keywords

Diabetes Genetic testing Decision-making Qualitative research 

Notes

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.

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.

Animal Studies

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

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Copyright information

© National Society of Genetic Counselors, Inc. 2016

Authors and Affiliations

  • Alicia G. Carmichael
    • 1
  • Bailey B. Hulswit
    • 2
  • Emily J. Moe
    • 3
  • Toby Epstein Jayaratne
    • 4
  • Beverly M. Yashar
    • 5
  1. 1.BioSocial Methods Collaborative, Research Center for Group Dynamics, Institute for Social ResearchUniversity of MichiganAnn ArborUSA
  2. 2.Center for Molecular Medicine and GeneticsWayne State UniversityDetroitUSA
  3. 3.Genetics and Genomics ProgramChildren’s Hospital of WisconsinMilwaukeeUSA
  4. 4.Department of Health Behavior and Health Education, School of Public HealthUniversity of MichiganAnn ArborUSA
  5. 5.Department of Human GeneticsUniversity of MichiganAnn ArborUSA

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