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Coming Full Circle: A Reciprocal-Engagement Model of Genetic Counseling Practice

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Journal of Genetic Counseling

Abstract

As genetic health care and genetic testing expand from primarily addressing conditions that are exclusively genetic in nature to common diseases with both genetic and environmental components, the scope of genetic counseling has grown. Identification and utilization of a normative model of practice defined by members of the profession is critical as genetic services become more commonplace in medical care. The purpose of this paper is to describe the results of a consensus conference convened to define a model of genetic counseling practice based on the guidance of educators and leaders in the profession. Twenty-three program directors or their representatives from 20 genetic counseling graduate programs in North America listened to presentations and participated in group discussions aimed at determining the elements of a model of practice, including tenets, goals, strategies, and behaviors for addressing patients’ genetic concerns. Their discussion is summarized, training implications and research recommendations are presented, and a model of practice that extends their ideas is proposed.

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Acknowledgements

This project was supported in part by a grant from the Consortium on Law and Values in Health, Environment, and the Life Sciences, University of Minnesota.

We would like to thank our consensus conference participants: Bonnie Baty, Barbara Bowles Biesecker, Nancy Callanan, Fiona Field, Betsy Gettig, Ann Greb, Robin Grubs, Susan Hassed, Caroline Lieber, Anne Matthews, Sarah Noblin, Kelly Ormond, John Quillin, Casey Reiser, Cheryl Schuman, Kathryn Spitzer Kim, Carol Walton, Nancy Warren, Cathy Wicklund, Lori Williamson Cruse, Bev Yashar, and Randy Zinberg. We also thank our presenters, Michelle Fox, Robert Resta, and Jon Weil, for their valuable consultation regarding development of the conference format and content, for their excellent presentations, for their assistance with group discussions, and for their feedback on this paper. We thank Ling-Hsuan Tung for her assistance with the literature review for this project. Finally, we are grateful to the reviewers and the Editor of this journal for their incisive comments on earlier drafts of this paper.

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Authors and Affiliations

  1. Department of Educational Psychology, 206 Burton Hall, University of Minnesota, 178 Pillsbury Dr., SE, Minneapolis, MN, 55455, USA

    Patricia McCarthy Veach

  2. Center for Bioethics, University of Minnesota, Minneapolis, MN, USA

    Dianne M. Bartels

  3. Department of Genetics, Cell Biology, and Development, Institute of Human Genetics, University of Minnesota, Minneapolis, MN, USA

    Bonnie S. LeRoy

Authors
  1. Patricia McCarthy Veach
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  2. Dianne M. Bartels
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  3. Bonnie S. LeRoy
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Corresponding author

Correspondence to Patricia McCarthy Veach.

Appendix

Appendix

Stimulus Questions for Consensus Conference Discussion Groups

Questions for Day 1:

  • What do you think a model of practice is?

  • Do you have a consciously articulated model of genetic counseling when you train students, or does that model “just seem to be there”? If you do have a model, what are the components of that model?

  • Is the model of genetic counseling that you teach similar to what you were taught?

  • Has the model of genetic counseling that you teach changed over time? If so, how and why?

  • Where do you look to for guidance when you wish to articulate, change, or question genetic counseling practice? Specific journals? Specific authors? Meetings? Discussions with colleagues? Other?

  • Which field or profession other than genetics and psychology/counseling/therapy do you think makes the greatest contribution to our model?

  • What do you think are the three largest sources of inertia or resistance to further development of the psychosocial component of genetic counseling?

Facilitator Prompts:

  • What term do you prefer: Client? Patient? Counselee? Consumer? Other? Why?

  • What do you consider to be success in genetic counseling? Why?

  • What is failure in genetic counseling? Why?

  • What metaphors capture the genetic counseling relationship?

Questions for Day 2:

  • What tenets (assumptions, beliefs, principles, convictions) guide genetic counseling practice?

  • What are genetic counseling’s fundamental beliefs/assumptions about human nature, as they pertain to genetic counseling. [Examples of fundamental beliefs/assumptions from mental health counseling might include: (1)You cannot make other persons do what they don’t want to, even when their own life is at stake; (2) People are strong, capable, and resilient, despite their situation; (3) Relationship above all else is essential).]

  • What are the goals (objectives, aims, purposes) of genetic counseling? What are realistic counseling goals for genetic counselors?

  • What strategies (plans, approaches, methods) do genetic counselors use to achieve these goals?

  • What behaviors (actions) do genetic counselors engage in to implement these strategies?

  • Identify the tenets, goals, strategies, and behaviors that are most essential to a genetic counseling session and the tenets, goals, strategies, and behaviors that are least essential to a genetic counseling session.

  • Do tenets, goals, strategies, and behaviors vary by genetic counseling specialty/patient condition (e.g., assisted reproductive technologies, pediatrics, prenatal, neurogenetics, psychiatric, and cancer genetics)? If so, how?

  • Do tenets, goals, strategies, and behaviors vary by patient cultural background? If so, how?

Facilitator Prompts:

  • What do I really believe about genetic counseling?

  • How does that impact what I do with clients? What I teach to students?

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Veach, P.M., Bartels, D.M. & LeRoy, B.S. Coming Full Circle: A Reciprocal-Engagement Model of Genetic Counseling Practice. J Genet Counsel 16, 713–728 (2007). https://doi.org/10.1007/s10897-007-9113-4

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  • DOI: https://doi.org/10.1007/s10897-007-9113-4

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