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Normative and Pragmatic Dimensions of Genetic Counseling pp 9–45Cite as

Genetic Counseling: Models and Visions

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Part of the book series: Philosophy and Medicine ((PHME,volume 124))

Abstract

The professional attitudes and competencies of genetic counselors are often informed by either a teaching model or a psychotherapeutic model. This bifurcation within the profession is generally accepted in the genetic counseling literature despite a diversity of modeling strategies. Evidence of the pervasiveness of the two-model approach can be seen in the analytic schemes of empirical studies that distinguish educational and counseling communication styles. An interest in a unified model has motivated discussion of how to combine the teaching and the psychotherapeutic models. Attempts have been made to subsume one model under another or to combine them by simple addition. In this project, I endorse an alternative model of genetic counseling; in this chapter, I claim that the teaching and psychotherapeutic models are underwritten by problematic visions of communication that disqualify them as theoretical contenders.

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Notes

  1. 1.

    S. Kessler , “Psychological Aspects of Genetic Counseling. Ix. Teaching and Counseling,” Journal of Genetic Counseling 6, no. 3 (1997): 287–95.;L. J. Lewis, “Models of Genetic Counseling and Their Effects on Multicultural Genetic Counseling,” J Genet Couns 11, no. 3 (2002): 193–212. Also see Ann C. Smith’s “Patient Education” and Luba Djurdjinovic’s “Psychosocial Counseling” in Diane L. Baker and others, A Guide to Genetic Counseling (New York: Wiley-Liss, 1998), 99–170.

  2. 2.

    Ann Platt Walker, “The Practice of Genetic Counseling” in Baker and others, 1–26. In a widely used genetic counseling text book Walker identifies four models: (1) Eugenic (2) Medical/Preventive (3) Decision-Making (4) Psychotherapeutic. Whereas the concern of the present study is to analyze models that are currently operational, Walker’s analysis is concerned with representing changes along a historical trajectory. More proximate is Veach, P.M., and others. “Coming Full Circle: A Reciprocal-engagement Model of Genetic Counseling Practice.” Journal of Genetic Counseling 16, no. 6 (2007): 713–728.

  3. 3.

    L. Ellington and others, “Exploring Genetic Counseling Communication Patterns: The Role of Teaching and Counseling Approaches,” J Genet Couns 15, no. 3 (2006): 179–89.;L. Ellington and others, “Communication Analysis of Brca1 Genetic Counseling,” J Genet Couns 14, no. 5 (2005): 377–86.;D. Roter and others, “The Genetic Counseling Video Project (Gcvp): Models of Practice,” Am J Med Genet C Semin Med Genet 142, no. 4 (2006): 209–20. See also L. Ellington and others, “Communication in Genetic Counseling: Cognitive and Emotional Processing.” Health Communication 26, no. 7 (2011): 667–675.

  4. 4.

    Kessler , “Psychological Aspects of Genetic Counseling. Ix. Teaching and Counseling,” 288.

  5. 5.

    Ibid., 290.

  6. 6.

    Ellington and others, “Exploring Genetic Counseling Communication Patterns: The Role of Teaching and Counseling Approaches.”

  7. 7.

    Ibid., 183.

  8. 8.

    R. Resta and others, “A New Definition of Genetic Counseling: National Society of Genetic Counselors’ Task Force Report,” J Genet Couns 15, no. 2 (2006): 77.

  9. 9.

    Kessler , “Psychological Aspects of Genetic Counseling. Ix. Teaching and Counseling,” 294.

  10. 10.

    Ad Hoc Committee on Genetic Counseling, “Genetic Counseling,” Am J Hum Genet 27, no. 2 (1975): 240–2.

  11. 11.

    S. Kessler , “Psychological Aspects of Genetic Counseling. Xiv. Nondirectiveness and Counseling Skills,” Genet Test 5, no. 3 (2001): 187.

  12. 12.

    I have borrowed the term ‘expressive resources ’ from Robert Brandom . It refers to linguistic phenomena that allow us to relate explicitly to features of our world, i.e. rocks and logic , rather than remain implicit . Having expressive resources allows to talk about and judge our world in ways not possible by nondiscursive means. To recognize that expressive resources are lacking one must have access to the missing resources.

  13. 13.

    Peters , Speaking into the Air : A History of the Idea of Communication , 63–108.

  14. 14.

    In the next chapter, I introduce a responsibility model of genetic counseling and underwrite it with a pragmatic theory of communication .

  15. 15.

    Peters , Speaking into the Air : A History of the Idea of Communication , 28–29.

  16. 16.

    Ibid., 65.

  17. 17.

    The observable existence of angels is not at issue here but rather their existence within a conceptual imaginary that specifies communication .

  18. 18.

    Peters , Speaking into the Air: A History of the Idea of Communication , 76.

  19. 19.

    Thomas Aquinas and Dominicans. English Province., Summa Theologica, Complete English ed. (Westminster, Md.: Christian Classics, 1981). Part 1, Question 107, Article 1.

  20. 20.

    Peters , Speaking into the Air : A History of the Idea of Communication , 88.

  21. 21.

    Ibid., 87.

  22. 22.

    John Locke and P. H. Nidditch, An Essay Concerning Human Understanding, The Clarendon Edition of the Works of John Locke (Oxford, New York: Clarendon Press, Oxford University Press, 1979), Book 3, Chapter 9, Section 6.

  23. 23.

    Peters , Speaking into the Air: A History of the Idea of Communication , 87. Peters directs attention to Locke ’s comments on the communication of spirits in An Essay Concerning Human Understanding (2.23.36): “That, in our ideas of spirits, how much so ever advanced in perfection beyond those of bodies, even to that of infinite, we cannot yet have any idea of the manner wherein they discover their thoughts one to another: though we must necessarily conclude that separate spirits, which are beings that have perfecter knowledge and greater happiness than we, must needs have also a perfecter way of communicating their thoughts than we have, who are fain to make use of corporeal signs, and particular sounds; which are therefore of most general use, as being the best and quickest we are capable of.”

  24. 24.

    Jaroslav Peregrin, Meaning and Structure : Structuralism of (Post)Analytic Philosophers, Ashgate New Critical Thinking in Philosophy (Aldershot, Hants, England ; Burlington, VT: Ashgate, 2001), 16.

  25. 25.

    Peters , Speaking into the Air: A History of the Idea of Communication , 75.

  26. 26.

    Despite their development of notions of thought and language, Augustine and Aquinas writing in Latin did not have access to a word that plays a similar role as ‘communication ’ does in English. Peters introduces Locke after the early scientific materialist development because he is organizing his account chronologically. I place Locke before the materialists because I am ordering my account around the two problematics of the spiritualist tradition . Etymologically, Locke inherited communication as a concept from the materialists.

  27. 27.

    Peters , Speaking into the Air : A History of the Idea of Communication , 78.

  28. 28.

    Ibid., 80.

  29. 29.

    Peters notes that 4 years after the telegraph the first organized version of spiritualism began in the U.S. with the rapping sounds of Kate and Margaret Fox of Hydesville, New York. These women became well known mediums that allegedly channeled the spirits of the dead. Communicating with the dead, although an ancient practice, helped to coordinate technological and spiritual vocabularies.

  30. 30.

    Claude Elwood Shannon and Warren Weaver, The Mathematical Theory of Communication (Urbana,: University of Illinois Press, 1949).

  31. 31.

    Lily E. Kay, Who Wrote the Book of Life? : A History of the Genetic Code, Writing Science (Stanford, Calif.: Stanford University Press, 2000), 304.

  32. 32.

    Gary P. Radford, On the Philosophy of Communication , Wadsworth Philosophical Topics (Belmont, Calif.: Thomson Wadsworth, 2005), 72–73.

  33. 33.

    Ibid., 74.

  34. 34.

    Ibid., 74–75.

  35. 35.

    Ibid., 74.

  36. 36.

    Kay, 174.

  37. 37.

    Ibid., 304–5.

  38. 38.

    John R. Searle, Expression and Meaning : Studies in the Theory of Speech Acts (Cambridge, Eng.; New York: Cambridge University Press, 1979), 117. Searle challenges the notion that most sentences have literal meaning independent of context or in “zero context .”

  39. 39.

    Body language and other non-linguistic structures lack clear rules for usage and therefore tend to be neglected by this vision.

  40. 40.

    J. R. Sorenson , “Genetic Counseling: Values That Have Mattered,” in Prescribing Our Future: Ethical Challengs in Genetic Counseling, ed. D. M. bartels (New York: Aldine De Gruyter, 1993), 7.

  41. 41.

    Ibid.

  42. 42.

    For a review of this debate, see Sheldon Clark Reed , Counseling in Medical Genetics (Philadelphia: Saunders, 1955).; J. L. Benkendorf and others, “Does Indirect Speech Promote Nondirective Genetic Counseling? Results of a Sociolinguistic Investigation,” Am J Med Genet 106, no. 3 (2001): 199–207, S. Kessler , “Psychological Aspects of Genetic Counseling: Analysis of a Transcript,” Am J Med Genet 8, no. 2 (1981): 137–53, S. M. Suter, “Value Neutrality and Nondirectiveness : Comments On “Future Directions in Genetic Counseling,” Kennedy Inst Ethics J 8, no. 2 (1998): 161–3.

  43. 43.

    Y. Edward Hsia , “The Genetic Counselor as Information Giver,” in Genetic Counseling: Facts, Values, and Norms, ed. Alexander Morgan Capron, Birth Defects: Original Article Series (New York: Alan R. Liss, 1979), 169–86. The 28 years that have passed since this article was published do not undermine its relevance. The importance of the article is that it presents the teaching model in sufficient detail to articulate the complexities of an approach whose prevalence is significant if not still dominant in actual practice.

  44. 44.

    Ibid., 169.

  45. 45.

    Ibid., 170–3.

  46. 46.

    Ibid., 170.

  47. 47.

    Ibid., 173.

  48. 48.

    Ibid., 175.

  49. 49.

    Ibid., 176.

  50. 50.

    Ibid., 177.

  51. 51.

    Ibid.

  52. 52.

    Ibid., 178.

  53. 53.

    Ibid., 179.

  54. 54.

    Kessler , “Psychological Aspects of Genetic Counseling. Ix. Teaching and Counseling,” 287–95. Kessler ’s work has in many ways set the terms of the discussion about genetic counseling models. His consistent reference of Hsia ’s work as a paradigm of the teaching model has in a sense revived Hsia ’s perspective 20 years later. Charles Bosk cites Hsia as a representative figures in debates about nondirectiveness in his Charles Bosk, “The Workplace Ideology of Genetic Counselors,” in Prescribing Our Future: Ethical Challenges in Genetic Counseling, ed. D. M. Bartels, B. LeRoy, and Arthur L. Caplan (New York: Aldine de Gruyter, 1993), 27.

  55. 55.

    For a study that identifies the large number of benefits at stake, see, B. A. Bernhardt, B. B. Biesecker, and C. L. Mastromarino, “Goals, Benefits, and Outcomes of Genetic Counseling: Client and Genetic Counselor Assessment,” Am J Med Genet 94, no. 3 (2000): 189–97.

  56. 56.

    Hsia , 184.

  57. 57.

    One line of research within the genetic counseling tradition is outcome based. For a review of these issues, see A. Clarke, E. Parsons, and A. Williams, “Outcomes and Process in Genetic Counselling,” Clin Genet 50, no. 6 (1996): 462–9.

  58. 58.

    Hsia , 177.

  59. 59.

    Peters , Speaking into the Air: A History of the Idea of Communication , 26.

  60. 60.

    Carl R. Rogers, On Becoming a Person; a Therapist’s View of Psychotherapy (Boston,: Houghton Mifflin, 1961), 339.

  61. 61.

    Rogers avoids using the terms ‘techniques’ or ‘methods’ because of the concern that when detached from the root hypothesis clients quickly recognize and resist them.

  62. 62.

    Rogers, 174.

  63. 63.

    Carl R. Rogers, Client-Centered Therapy, Its Current Practice, Implications, and Theory (Boston,: Houghton Mifflin, 1951), 29.

  64. 64.

    Rogers, On Becoming a Person; a Therapist’s View of Psychotherapy, 154.

  65. 65.

    Joan Marks, “The Training of Genetic Counselors: Origins of a Psychosocial Model,” in Prescribing Our Future: Ethical Challenges in Genetic Counseling, ed. D. M. Bartels, B. LeRoy, and Arthur L. Caplan (New York: Aldine de Gruyter, 1993), 20.

  66. 66.

    Sarah Lawrence College, Human Genetics 2007–2008 Courses [website] (Sarah Lawrence College, 2008, accessed January 11 2008); available from http://www.slc.edu/human-genetics/Courses.php.

  67. 67.

    For a compelling account of Sarah Lawrence’s influence, see Arno Motulsky, “2003 Ashg Award for Excellence in Human Genetics Education: Introductory Remarks for Joan Marks,” Am J Hum Genet 74 (2004). See also Stern, A. Telling Genes : The Story of Genetic Counseling in America. Baltimore: Johns Hopkins University Press, 2012.

  68. 68.

    Rogers, Client-Centered Therapy, Its Current Practice, Implications, and Theory, 144–5.

  69. 69.

    Ibid.

  70. 70.

    Ibid., 144.

  71. 71.

    Ibid.

  72. 72.

    Jon Weil , Psychosocial Genetic Counseling, Oxford Monographs on Medical Genetics ; No. 41 (New York: Oxford University Press, 2000), 54. One significance of this quotation is that Weil motivates his approach to genetic counseling using an approach cited from an updated version of Roger’s person-centered therapy.

  73. 73.

    Ibid., 55.

  74. 74.

    Ibid., 57.

  75. 75.

    Ibid., 58–63.

  76. 76.

    Ibid., 59.

  77. 77.

    Ibid., 66.

  78. 78.

    Kessler ’s use of ‘syntactic’ rather than ‘semantic ’ is questionable. Syntactic contexts usually refer to subsentential contexts and the rules that govern them whereas semantic contexts involve the circumstance in which a move is made in the language game.

  79. 79.

    Seymour Kessler , Genetic Counseling : Psychological Dimensions (New York: Academic Press, 1979), 39.

  80. 80.

    Ibid., 40.

  81. 81.

    S. Kessler , “Psychological Aspects of Genetic Counseling. Xi. Nondirectiveness Revisited,” Am J Med Genet 72, no. 2 (1997): 166. His stance has evolved over the years and can be interpreted as slowly revising the Rogerian approach.

  82. 82.

    Kessler , “Psychological Aspects of Genetic Counseling. Ix. Teaching and Counseling,” 293.

  83. 83.

    Carl Rogers, Jon Weil , and Seymour Kessler all attend to the limitations of aiming towards empathic identifcation.

  84. 84.

    Weil , 20–21. Weil characterizes some patients and their guilt as substituting personal responsibility for the existential void of randomness in order to avoid the reality of contingency.

  85. 85.

    What I hope to show in the next chapter is that these kinds of assessments can be facilitated by the HCP without taking on the responsibility of actually making judgments about clients .

  86. 86.

    E. W. Clayton, “The Web of Relations: Thinking About Physicians and Patients,” Yale J Health Policy Law Ethics 6, no. 2 (2006): 472–75. Clayton provides a helpful synopsis of the competing interests and professional shortcomings that affect even the most thoughtful of physicians.

  87. 87.

    Kessler , “Psychological Aspects of Genetic Counseling. Ix. Teaching and Counseling,” 290.

  88. 88.

    Ibid., 291.

  89. 89.

    Ibid.

  90. 90.

    Kessler , “Psychological Aspects of Genetic Counseling: Xii. More on Counseling Skills,” 263.

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  1. Vanderbilt University Medical Center, Nashville, Tennessee, USA

    Joseph B. Fanning

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Fanning, J.B. (2016). Genetic Counseling: Models and Visions. In: Normative and Pragmatic Dimensions of Genetic Counseling. Philosophy and Medicine, vol 124. Springer, Cham. https://doi.org/10.1007/978-3-319-44929-6_2

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