Journal of Genetic Counseling

, Volume 11, Issue 3, pp 163–186 | Cite as

A Survey of Genetic Counselors' Strategies for Addressing Ethical and Professional Challenges in Practice

  • Matthew A. Bower
  • Patricia McCarthy Veach
  • Dianne M. Bartels
  • Bonnie S. LeRoy


There is limited research about ethical and professional dilemmas that genetic counselors encounter in their practice and their strategies for addressing them. In this study, 454 genetic counselors rated the frequency with which they encounter each of 16 ethical/professional challenges identified and categorized previously (McCarthy Veach P, Bartels DM, LeRoy BS (2001) J Genet Couns 10(2):97–119). Over 40% indicated these issues occurred frequently: patient emotions, diversity, financial constraints, uncertainty, and colleague error. Two hundred and fifty-five respondents provided personal anecdotes describing exceptionally challenging situations and recommended strategies for addressing them. Most of their anecdotes involved informed consent, value conflicts, confidentiality, colleague error, withholding information, and resource allocation. The most frequently recommended strategies were further discussion with patient, consultation with other professionals, and referral to other health sources. Thirty-five respondents were unable to/did not offer strategies. Respondent demographics were not related to frequency of issues, type of anecdote, or recommended strategies. Practice, policy, and research implications are discussed.

ethical strategies ethical and professional issues genetic counseling 


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. Bartels DM, LeRoy BS, McCarthy P, Caplan AL (1997) Nondirectiveness in genetic counseling: A survey of practitioners. Am J Med Genet 72: 172–179.PubMedGoogle Scholar
  2. Billings PR, Kohn MA, deCuevas M, Beckwith J, Alper JS, Natowicz MR (1992) Discrimination as a consequence of genetic testing. Am J Hum Genet 50:476–482.PubMedGoogle Scholar
  3. Bowles Biesecker B(2000) The ethics of reproductive genetic counseling: Nondirectiveness. In: Murray TH, Mehlman MJ (eds) The Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology, Vol.2. New York: Wiley, pp 982–997.Google Scholar
  4. Bowles Biesecker B, Marteau TM (1999) The future of genetic counselling: An international perspective. Nat Genet 22:133–137.PubMedGoogle Scholar
  5. Callahan TC, Durfy SJ, Jonsen AR (1995) Ethical reasoning in clinical genetics: A survey of cases and methods. J Clin Ethics 6:248–253.PubMedGoogle Scholar
  6. Cho MK, Arruda M, Holtzman NA (1997) Educational material about genetic tests: Does it provide key information for patients and practitioners? Am J Med Genet 73:314–320.PubMedGoogle Scholar
  7. Collins FS (1999) Shattuck lecture: Medical and societal consequences of the Human Genome Project. N Engl J Med 341:28–37.PubMedGoogle Scholar
  8. Giardiello FM, Brensinger JD, Petersen GM, Luce MC, Hylind ML, Bacon JA, Booker SV, Parke RD, Hamilton SR (1997) The use and interpretation of commercial APC gene testing for familial adenomatous polyposis. N Engl J Med 336:823–827.PubMedGoogle Scholar
  9. Hayflick SJ, Eiff MP, Carpenter L, Steinberger J (1998) Primary care physicians' utilization and perceptions of genetics services. Genet Med 1:13–21.PubMedGoogle Scholar
  10. Juengst ET (1997/1998) Caught in the middle again: Professional ethical considerations in genetic testing for health risks. Genet Test 1: 189–200.PubMedGoogle Scholar
  11. Kennedy AL (2000) Supervision for practicing genetic counselors: An overview of models. J Genet Couns 9:379–390.Google Scholar
  12. Kessler S (1992) Psychological aspects of genetic counseling. VII. Thoughts on directiveness. J Genet Couns 1:9–17.PubMedGoogle Scholar
  13. Maley JA (1994) An Ethics Casebook for Genetic Counselors. Charlottesville, VA: Center for Biomedical Ethics and Division of Medical Genetics, University of Virginia.Google Scholar
  14. McCarthy Veach P, Bartels DM, LeRoy BS (2002) Commentary on genetic counseling—A profession in search of itself. J Genet Couns 11: 187–191.Google Scholar
  15. McCarthy Veach P, Bartels DM, LeRoy BS (2001) Ethical and professional challenges posed by patients with genetic concerns: A report of focus group discussions with genetic counselors, physicians, and nurses. J Genet Couns 10(2): 97–119.PubMedGoogle Scholar
  16. McGee G, Arruda M (1998) A crossroads in genetic counseling and ethics. Camb Q Healthc Ethics 7:97–100.PubMedGoogle Scholar
  17. NSGC (1992) National Society of Genetic Counselors code of ethics. J Genet Couns 1:41–43.Google Scholar
  18. Pencarinha DF, Bell NK, Edwards JG, Best RG (1992) Ethical issues in genetic counseling: A comparison of M.S. counselor and medical geneticist perspectives. J Genet Couns 1:19–30.PubMedGoogle Scholar
  19. Wertz DC, Fletcher JC (1988) Ethics and medical genetics in the United States: A national survey. Am J Med Genet 29:815–827.PubMedGoogle Scholar
  20. Wertz DC, Fletcher JC (1989) Moral reasoning among medical geneticists in eighteen nations. Theor Med 10:123–138.PubMedGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2002

Authors and Affiliations

  • Matthew A. Bower
    • 1
  • Patricia McCarthy Veach
    • 2
  • Dianne M. Bartels
    • 3
  • Bonnie S. LeRoy
    • 4
  1. 1.Fairview University Medical CenterMinneapolis
  2. 2.Department of Educational PsychologyUniversity of MinnesotaMinneapolis
  3. 3.Center for BioethicsUniversity of MinnesotaMinneapolis
  4. 4.Department of Genetics, Cell Biology, and Development, Institute of Human GeneticsUniversity of MinnesotaMinneapolis

Personalised recommendations