Abstract
In genetic counseling, facilitation of autonomous decision-making is seen as a primary aim and respect for autonomy is used to justify a nondirective counseling approach whereby clients are free to make their own choices after being given all necessary information. However in the genetic counseling literature, autonomy as a concept appears to be interpreted variably and often narrowly. We offer a practical account of autonomy that is coherent, consistent and philosophically defensible for the genetic counseling setting. At the same time we demonstrate how nondirective counseling may serve to frustrate rather than facilitate client autonomy. We suggest that promoting purposeful dialogue rather than counseling that is nondirective is more conducive to client autonomy.
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Asch, A. (1994). The human genome and disability rights. Disabil Rag Resour, 13, 12–15.
Bartels, D. M., LeRoy, B. S., McCarthy, P., & Caplan, A. L. (1997). Nondirectiveness in genetic counseling: A survey of practitioners. Am J Med Genet, 72(2), 172–179.
Beauchamp, T., & Childress, J. (2001). Principles of Biomedical Ethics (5th ed.). New York: Oxford University Press.
Bernhardt, B. A. (1997). Empirical evidence that genetic counseling is directive: Where do we go from here? Am J Hum Genet, 60(1), 17–20.
Biesecker, B. B. (1998). Future directions in genetic counseling: Practical and ethical considerations. Kennedy Inst Ethics J, 8(2), 145–160.
Biesecker, B. B., & Marteau, T. M. (1999). The future of genetic counseling: An international perspective. Nat Genet, 22(2), 133–137.
Biesecker, B. B., & Peters, K. F. (2001). Process studies in genetic counseling: Peering into the black box. Am J Med Genet, 106(3), 191–198.
Biesecker, B. B. (2001). Goals of genetic counseling. Clin Genet, 60(5), 323–330.
Caplan, A. L. (1993). Neutrality is not morality: The ethics of genetic counseling. In D. M Bartels, B. S Le Roy, & A. L. Caplan (Eds.), Prescribing Our Future: Ethical Challenges in Genetic Counseling (pp. 149–165). New York: Aldine de Gruyter.
Chapple, A., May, C., & Campion, P. (1995). Parental guilt: The part played by the clinical geneticist. J Genet Couns, 4(3), 179–191.
Clarke, A. (1991). Is nondirective genetic counseling possible? Lancet, 338(8773), 998–1001.
Costigan, J., & Fidler, E. (2000). Ups and Downs-Lives of Love, Challenge and Commitment. Blackburn, Victoria: PenFolk Publishing.
Dworkin, G. (1988). The Theory and Practice of Autonomy. Cambridge: Cambridge University Press.
Dworkin, G. (1993). Autonomy. In R. Goodin & P. Pettit (Eds.), A Companion to Contemporary Political Philosophy (pp. 359–365). Oxford: Blackwell.
Elwyn, G., Gray, J., & Clarke, A. (2000). Shared decision making and nondirectiveness in genetic counseling. J Med Genet, 37(2), 135–138.
Engelhardt, H. T., Jr. (1978). Basic Ethical Principles in the Conduct of Biomedical and behavioral Research Involving Human Subjects. National Commission for the Protection of Human Subjects of Biomedical and behavioral research: Appendix: Vol 1. Belmont Report
Faden, R. R., & Beauchamp, T. L. (1986). A History and Theory of Informed Consent. New York: Oxford University Press.
Kessler, S. (1981). Psychological aspects of genetic counseling: Analysis of a transcript. Am J Med Genet, 8, 137–153.
Kessler, S. (1992). Psychological aspects of genetic counseling: VII. Thoughts on directiveness. J Genet Counsel, 1(1), 9–17.
Kessler, S. (1997). Psychological aspects of genetic counseling. XI. Nondirectiveness revisited. Am J Med Genet, 72, 164–171.
Lippman, A. (1991). Prenatal genetic testing and screening: Constructing needs and reinforcing inequities. Am J Law Med, 17(1–2), 15–50.
Lippman-Hand, A., & Fraser, F (1979). Genetic counseling; provision and reception of information. Am J Med Genet, 3, 113–117.
McAllister, M. (2003). Personal theories of inheritance, coping strategies, risk perception and engagement in hereditary nonpolyposis colon cancer families offered genetic testing. Clin Genet, 64(3), 179–189.
McConkie-Rosell, A., & Sullivan, J. A. (1999). Genetic counseling-stress, coping, and the empowerment perspective. J Genet Couns, 8(6), 345–357.
Michie, S., Bron, F., Bobrow, M., & Marteau, T. M. (1997). Nondirectiveness in genetic counseling: An empirical study. Am J Hum Genet, 60(1), 40–47.
Murray, T. H. (1996). The worth of a child. Berkeley/Los Angeles/London: University of California Press.
Rapp, R. (1999). Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge.
Rogers, C. (1951). Client-Centered Therapy: Its Current Practice, Implications and Theory. Boston: Houghton Mifflin.
Rothman, B. K. (1986). The Tentative Pregnancy: Prenatal Diagnosis and the Future of Motherhood. New York: Viking.
Savulescu, J., & Momeyer, R. W. (1997). Should informed consent be based on rational beliefs? J Med Ethics, 23(5), 282–288.
Shiloh, S. (1996). Decision-making in the context of genetic risk. In T. Marteau & M. Richards (Eds.), The Troubled Helix: Social and Psychological Implications of the New Genetics. New York: Cambridge University Press.
Somer, M., Mustonen, H., & Norio, R. (1988). Evaluation of genetic counseling: Recall of information, post-counseling reproduction, and attitude of the counsellees. Clin Genet, 34(6), 352–365.
Spriggs, M. (1998). Autonomy in the face of a devastating diagnosis. J Med Ethics, 24(2), 123–126.
Spriggs, M. (2005). Autonomy and patients’ decisions. Maryland, Lexington Books.
van Zuuren, F. J. (1997). “The standard of neutrality during genetic counseling: An empirical investigation.” Patient Educ Couns, 32(1–2): 69–79.
Veach, P. M., Truesdell, S. E., LeRoy, B. S., & Bartels, D. M. (1999). Client perceptions of the impact of genetic counseling: An exploratory study. J Genet Couns, 8(4), 191–216.
Weil, J. (2003). Psychosocial genetic counseling in the post-nondirective era: A point of view. J Genet Couns, 12(3), 199–211.
White, M. T. (1997). “Respect for autonomy” in genetic counseling: An analysis and a proposal. J Genet Couns, 6(3), 297–313.
Yarborough, M., Scott, J. A., & Dixon, L. K. (1989). The role of beneficence in clinical genetics: nondirective counseling reconsidered. Theor Med, 10(2), 139–149.
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Hodgson, J., Spriggs, M. A Practical Account of Autonomy: Why Genetic Counseling is Especially Well Suited to the Facilitation of Informed Autonomous Decision Making. J Genet Counsel 14, 89–97 (2005). https://doi.org/10.1007/s10897-005-4067-x
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DOI: https://doi.org/10.1007/s10897-005-4067-x