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16-04-2022 | Scientific Contribution

The principle of nondirectiveness in genetic counseling. Different meanings and various postulates of normative nature

Author: Weronika Chańska

Published in: Medicine, Health Care and Philosophy | Issue 3/2022

Abstract

The article aims at organizing multifaceted discourse on the concept of nondirectiveness in the practice of genetic counseling. The analysis of areas where nondirectiveness was invoked and discussed reveals the problematic confusion of different meanings of the term that often leads to false conclusions about the relations between the professional standards and the practice of genetic counseling. The article offers clear and comprehensive description of different approaches to nondirectiveness and various ideas associated with the term. Normative consequences of various meanings attributed to nondirectiveness are explored. The article concludes by presenting important but unsolved problems regarding both theory (the meaning of nondirectiveness and its operational definition) and practice of genetic counseling (the scope and content of the norm of nondirective counseling).

See for example the report by the Task Force of the European Society of Human Reproduction and Embryology that cites professional statements on that issue (Dondorp et al. 2013).

See for example the statement by the American Society of Human Genetics (Botkin et al. 2015) or by the European Society of Human Genetics (Borry et al. 2009).

Austin, Jehannine, Alicia Semaka, and George Hadjipavlou. 2014. Conceptualizing genetic counseling as psychotherapy in the era of genomic medicine. Journal of Genetic Counseling 23 (6): 903–909. https://doi.org/10.1007/s10897-014-9728-1.CrossRef

Biesecker, Barbara. 2000. Reproduction, ethics, the ethics of reproductive genetic counseling: nondirectiveness. In Encyclopedia of ethical, legal, and policy issues in biotechnology, ed. T.J. Murray and M.J. Mehlman, 977–83. New York: Wiley.

Borry, Pascal, Gerry Evers-Kiebooms, Marina C. Cornel, Angus Clarke, and Kris Dierickx. 2009. Genetic testing in asymptomatic minors: Recommendations of the European Society of Human Genetics Recommendations of the European Society of Human Genetics. European Journal of Human Genetics 17 (6): 720–721. https://doi.org/10.1038/ejhg.2009.26.CrossRef

Bosk, Charles. 1993. The workplace ideology of genetic counselors. In Prescribing our future: Ethical challenges in genetic counseling, ed. D.M. Bartels, B.S. LeRoy, and A.L. Caplan, 25–37. New York: Aldine de Gruyter.

Botkin, Jeffrey R., John Belmont, W., Berg, Jonathan S., Berkman, Benjamin E., Bombard, Yvonne, Holm, Ingrid. A., Levy, Howard P., Ormond, Kelly, Saal, Howard, M., Spinner, Nancy, B., Wilfond, Benjamin, S., and McInerney, Joseph, D. 2015. Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. The American Journal of Human Genetics 97 (1): 6–21. https://doi.org/10.1016/j.ajhg.2015.05.022.CrossRef

Burke, Meredith, and Aliza Kolker. 1994. Variation in content in prenatal genetic counseling interviews. Journal of Genetic Counseling 3: 23–38. https://doi.org/10.1007/BF01414604.CrossRef

Caplan, Alan. 1993. Neutrality is not morality: The ethics of genetic counseling. In Prescribing our future: Ethical challenges in genetic counseling, ed. D.M. Bartels, B.S. LeRoy, and A.L. Caplan, 149–165. New York: Aldine de Gruyter.

Clarke, Angus. 1997. The process of genetic counseling: Beyond non-directiveness. In Genetics, society and clinical practice, ed. P.S. Harper and A.J. Clarke, 179–200. Oxford: BIOS Scientific.

Djurdjinovic, Luba. 1998. Psychosocial counseling. In A guide to genetic counseling, ed. D.L. Baker, J.L. Schuette, and W.R. Uhlmann, 127–166. New York: Wiley.

Djurdjinovic, L., and J. Peters. 2017. Special Issue Introduction: Dealing with psychological and social complexity in genetic counseling. Journal of Genetic Counseling 26 (2): 195–198. https://doi.org/10.1007/s10897-017-0080-0.CrossRef

Dondorp, W., G. De Wert, G. Pennings, F. Shenfield, P. Devroey, B. Tarlatzis, P. Barri, and K. Diedrich. 2013. ESHRE task force on ethics and law 20: Sex selection for non-medical reasons. Human Reproduction 28 (6): 1448–1454. https://doi.org/10.1093/humrep/det109.CrossRef

Ekwo, Edem, Jae-On. Kim, Gosselink Carol, Jonh Opitz, and James Reynolds. 1987. Parental perceptions of the burden of genetic disease. American Journal of Medical Genetics 28: 955–63. https://doi.org/10.1002/ajmg.1320280422.CrossRef

Eunpu, Deborah. 1997. Systemically-based psychotherapeutic techniques in genetic counseling. Journal of Genetic Counseling 6: 1–20. https://doi.org/10.1023/A:1025630917735.CrossRef

Frets, Petra, Hugo Duivenvoorden, Frans Verhage, Martinus Niermeijer, Sophie van de Berge, and Galjaard Hans. 1990. Factors influencing the reproductive decision after genetic counseling. American Journal of Medical Genetics 1990 (35): 496–502. https://doi.org/10.1002/ajmg.1320350411.CrossRef

Frets, Petra, and Martinus Niermeijer. 1990. Reproductive planning after genetic counseling: A perspective from the last decade. Clinical Genetics 38: 295–306. https://doi.org/10.1111/j.1399-0004.1990.tb03584.x.CrossRef

Forbes Shepherd, R., T.K. Browne, and L. Warwick. 2017. A relational approach to genetic counseling for hereditary breast and ovarian cancer. Journal of Genet Counseling 26 (2): 283–299. https://doi.org/10.1007/S10897-016-0022-2.CrossRef

Harris, Rodney. 1991. The new genetics: A challenge to traditional medicine. Journal of the Royal College of Physicians London 25: 134–140.

Hsia, Edward. 1979. The genetic counselor as information giver. In Genetic counseling: Facts, values, and norms, ed. A.M. Capron, 169–186. New York: Alan R. Liss.

Jamal, Leila, Will Schupmann, and Benjamin E. Berkman. 2020. An ethical framework for genetic counseling in the genomic era. Journal of Genetic Counseling 29 (5): 718–727. https://doi.org/10.1002/jgc4.1207.CrossRef

Kahneman, Daniel, Paul Slovic, and Amos Tversky. 1982. Judgment under uncertainty: heuristics and biases. Cambridge: Cambridge University Press.CrossRef

Kessler, Seymour, ed. 1979. Genetic counseling: Psychological dimensions. New York: Academic Press, Available from: https://www.gceducation.org/wp-content/uploads/2019/06/ACGC-Core-Competencies-Brochure_15_Web_REV-6-2019.pdf.

Kessler, Seymour. 1997a. Psychological aspects of genetic counselling. IX. Teaching and counseling. Journal of Genetic Counseling 6 (3): 287–95. https://doi.org/10.1023/A:1025676205440.CrossRef

Kessler, Seymour. 1997b. Psychological aspects of genetic counselling. XI. Nondirectiveness revisited. American Journal of Medical Genetics 72: 164–71.CrossRef

Leroy, Bonnie. 1993. When theory meets practice: Challenges to the field of genetic counseling. In Prescribing our future: Ethical challenges in genetic counseling, ed. D.M. Bartels, B.S. LeRoy, and A.L. Caplan, 39–54. New York: Aldine de Gruyter.

Lippman-Hand, Abby, and Clarke Fraser. 1979. Genetic counseling - The post-counseling period: II. Making reproductive choices. American Journal of Medical Genetics 4: 73–87. https://doi.org/10.1002/ajmg.1320040109.CrossRef

Marks, Joan. 1993. The training of genetic counselors: origins of a psychosocial model. In Prescribing our future. Ethical challenges in genetic counseling, ed. D.M. Bartels, B.S. LeRoy, and A.L. Caplan, 15–24. New York: Aldine de Gruyter.

McCarthy Veach, Patricia, Bonnie S. LeRoy, and Dianne M. Bartels. 2003. Facilitating the genetic counseling process: A manual for practice. New York: Springer.

Meiser, Bettina, Jennifer Irle, Elizabeth Lobb, and Kristine Barlow-Stewart. 2008. Assessment of the content and process of genetic counseling: A critical review of empirical studies. Journal of Genetic Counseling 17 (5): 434–451.CrossRef

Michie, Susan, Faye Bron, Martin Bobrow, and Theresa M. Marteau. 1997. Nondirectiveness in genetic counseling: An empirical study. Amercian Journal of Human Genetics 60 (1): 40–47. https://doi.org/10.1007/s10897-008-9173-0.CrossRef

National Society of Genetic Counselors. 2018. National society of genetic counselors code of ethics. Journal of Genetic Counseling 27 (1): 6–8. https://doi.org/10.1007/s10897-017-0166-8.CrossRef

Ormond, Kelly, Mercy Ygona Laurino, Kristine Barlow-Stewart, Tina-Marie. Wessels, Shelley Macaulay, Jehannine Austin, and Anna Middleton. 2018. Genetic counseling globally: Where are we now? American Journal of Medical Genetics Part C 178 (1): 98–107. https://doi.org/10.1002/ajmg.c.31607.CrossRef

Rapp, Rayna. 1988. Chromosomes and communication: The discourse of genetic counseling. Medical Anthropology Quarterly 2 (2): 143–157. https://doi.org/10.1525/maq.1988.2.2.02a00040.CrossRef

Rentmeester, Christy. 2001. Value neutrality in genetic counseling: An unattained ideal. Medicine, Health Care and Philosophy 4 (1): 47–51. https://doi.org/10.1023/a:1009972728031.CrossRef

Resta, Robert. 1997. Eugenics and nondirectiveness in genetic counseling. Journal of Genetic Counseling. 6 (2): 255–258. https://doi.org/10.1023/a:1025624505382.CrossRef

Resta, Robert, Barbara Bowles Biesecker, Robin L. Bennett, Sandra Blum, Susan Estabrooks Hahn, Michelle N. Strecker, and Janet L. Williams. 2006. A new definition of genetic counseling: National Society of Genetic Counselors’ task force report. Journal of Genetic Counseling 15 (2): 77–83. https://doi.org/10.1007/s10897-005-9014-3.CrossRef

Rogers, Carl. 1967. On becoming a person: A therapist’s view of psychotherapy. London: Constable.

Rogers, Carl. 1980. A way of being. Boston: Houghton-Mifflin.

Rothman, Barbara Katz. 1986. The tentative pregnancy. New York: Viking Penguin.

Ryan, J., A. Virani, and J.C. Austin. 2015. Ethical issues associated with genetic counseling in the context of adolescent psychiatry. Applied & Translational Genomics 5: 23–29. https://doi.org/10.1016/j.atg.2015.06.001.CrossRef

Schild, S. 1984. Markers for stress and criteria for ongoing counseling. Birth Defects Original Article Series 20: 107–113.

Shiloh, Shoshana, Orit Avdor, and Richard M. Goodman. 1990. Satisfaction with genetic counseling: Dimensions and measurement. American Journal of Medical Genetics 37: 522–29. https://doi.org/10.1002/ajmg.1320370419.CrossRef

Shiloh, Shoshana, and Michal Sagi. 1989. Effect of framing on the perception of genetic recurrence risks. American Journal of Medical Genetics 33: 130–35. https://doi.org/10.1002/ajmg.1320330121.CrossRef

Sorenson, James R. 1993. Genetic counseling: Values that have mattered. In Prescribing our future Ethical challenges in genetic counseling, ed. D.M. Bartels, B.S. LeRoy, and A.L. Caplan, 3–14. New York: Aldine de Gruyter.

Sorenson, James R., Carole M. Kavanagh, and Marc Mucatel. 1981. Client learning of risk and diagnosis in genetic counseling. Birth Defects Original Article Series 17 (1): 215–228.

Trepanier, Angela, Mary Ahrens, Wendy McKinnon, June Peters, Jill Stopfer, Sherry Campbell Grumet, Susan Manley, et al. 2004. Genetic cancer risk assessment and counseling: Recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling 13: 83–114. https://doi.org/10.1023/B:JOGC.0000018821.48330.77.CrossRef

Weil, Jon. 2000. Psychosocial genetic counseling. New York: Oxford University Press.

Weil, Jon. 2003. Psychosocial genetic counseling in the post-nondirective era: A point of view. Journal of Genetic Counseling 12 (3): 199–211. https://doi.org/10.1023/a:1023234802124.CrossRef

Weil, Jon, Kelly Ormond, June Peters, Kathryn Peters, Barbara Bowles Biesecker, and Bonnie LeRoy. 2006. The relationship of nondirectiveness to genetic counseling: Report of a workshop at the 2003 NSGC Annual Education Conference. Journal of Genetic Counseling 15 (2): 85–93.CrossRef

Wertz, Dorothy, and Fletcher James. 2004. Genetics and ethics in global perspective. Berlin: Springer.CrossRef

Wertz, Dorothy, and Fletcher James. 1988. Attitudes of genetic counselors: A multinational survey. American Journal of Human Genetics 42: 592–600.

Wertz, Dorothy, James Sorenson, Timothy Heeren, and Opitz John. 1984. Genetic counseling and reproductive uncertainty. American Journal of Medical Genetics 18: 79–88. https://doi.org/10.1002/ajmg.1320180112.CrossRef

Wertz, Dorothy, James Sorenson, and Timothy Heeren. 1986. Clients’ interpretation of risks provided in genetic counseling. American Journal of Human Genetics 39: 253–264.

West, Richard. 1988. Ethical aspects of genetic disease and genetic counselling. Journal of Medical Ethics 14 (4): 194–97. https://doi.org/10.1136/jme.14.4.194.CrossRef

White, Mary. 1997. “Respect for autonomy” in genetic counseling: An analysis and a proposal. Journal of Genetic Counseling 6: 297–313. https://doi.org/10.1023/a:1025628322278.CrossRef

Yarborough, Mark, Joan Scott, and Linda Dixon. 1989. The role of beneficence in clinical genetics: Non-directive counseling reconsidered. Theor Med 10 (2): 139–49. https://doi.org/10.1007/BF00539879.CrossRef

Title: The principle of nondirectiveness in genetic counseling. Different meanings and various postulates of normative nature
Author: Weronika Chańska
Publication date: 16-04-2022
Publisher: Springer Netherlands
Published in: Medicine, Health Care and Philosophy / Issue 3/2022
Print ISSN: 1386-7423
Electronic ISSN: 1572-8633
DOI: https://doi.org/10.1007/s11019-022-10085-0

2024 ASCO Annual Meeting

Springer Medicine

The principle of nondirectiveness in genetic counseling. Different meanings and various postulates of normative nature

Abstract

2024 ASCO Annual Meeting

Springer Medicine

Abstract

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