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“If It Helps, It’s Worth a Try”: an Investigation of Perceptions and Attitudes about Genetic Counseling among Southern Manitoba Hutterites

  • Original Research
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Journal of Genetic Counseling

Abstract

Few studies have explored the public’s views of genetic counseling services, and even fewer focus on founder populations with high prevalence of genetic disease, such as Hutterites. The Hutterites are an Anabaptist religious group grounded in a strong Christian faith. The primary aim of this study was to assess Hutterites’ views of genetic counseling services. A secondary aim was to compare their views to those obtained in a study of rural Midwestern U.S. residents (Riesgraf et al., Journal of Genetic Counseling, 24(4), 565-579, 2015). One-hundred eleven individuals from southern Manitoba Hutterite colonies completed an anonymous survey assessing familiarity with and attitudes about genetic counseling; perceptions of its purpose, scope and practice; and willingness to use genetic counseling services. Although many respondents were not familiar with genetic counseling, most had accurate perceptions and positive attitudes. For instance, mean ratings showed endorsement of trust in information provided by genetic counselors and agreement that genetic counseling aligns with their values. Logistic regression indicated reported willingness to use genetic counseling services increased if respondents: had a higher self-rated familiarity with genetic counseling; were younger; agreed with the statement: I would trust the information provided by a genetic counselor; and disagreed with the statements: Genetic counseling is only useful for a small group of people with rare diseases, and Genetic counselors help expectant parents choose the eye color of their child. Thematic analysis of comments regarding willingness to use genetic counseling services yielded themes of personal/family risk, pragmatism (genetic counseling is sensible and practical for managing health concerns), and desire to prevent genetic conditions in the Hutterite population. Comparison of the present findings to those of Riesgraf et al. suggests predictors of Hutterites’ willingness to use genetic counseling are unique and culturally-based. Limited replication of Riesgraf et al. was achieved. Additional findings, practice implications and research recommendations are presented.

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Acknowledgements

This study was completed in partial fulfillment of the requirements for the first author’s Master of Science degree from the University of Minnesota. We would like to express our gratitude to the genetic counselors and geneticists who assisted with the survey piloting and the

Dr. Christina Palmer served as Action Editor on the manuscript review process and publication decision.

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Authors and Affiliations

  1. Simmons Comprehensive Cancer Center, UTSouthwestern Medical Center, Dallas, TX, USA

    Amber P. Gemmell

  2. Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA

    Patricia McCarthy Veach & Bonnie S. LeRoy

  3. Department of Psychology, Austin College, Sherman, TX, USA

    Ian MacFarlane

  4. HealthEast, Maplewood, MN, USA

    Rachel Riesgraf

Authors
  1. Amber P. Gemmell
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  2. Patricia McCarthy Veach
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  3. Ian MacFarlane
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  4. Rachel Riesgraf
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  5. Bonnie S. LeRoy
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Correspondence to Amber P. Gemmell.

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Conflict of Interest

Amber P. Gemmell, Patricia McCarthy Veach, Ian M. MacFarlane, Rachel Riesgraf, and Bonnie S. LeRoy declare 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. This study was approved by the University of Minnesota IRB. Informed consent was obtained from all individual participants included in the study.

Animal Studies

This article does not contain any studies with animals performed by any of the authors.

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Gemmell, A.P., Veach, P.M., MacFarlane, I. et al. “If It Helps, It’s Worth a Try”: an Investigation of Perceptions and Attitudes about Genetic Counseling among Southern Manitoba Hutterites. J Genet Counsel 26, 1357–1371 (2017). https://doi.org/10.1007/s10897-017-0121-8

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  • DOI: https://doi.org/10.1007/s10897-017-0121-8

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