Genetic counselors' perceived responsibilities regarding reproductive issues for patients at risk for huntington disease

Journal of Genetic Counseling

Volumn 19, Issue 2, 2010, Pages 131-147

  Hines, Karrie A ^a   Veach, Patricia McCarthy ^b   LeRoy, Bonnie S ^b  

^a INDIANA UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b UNIVERSITY OF MINNESOTA   (United States)

Author keywords

Ethical dilemmas; Genetic counseling; Genetic counselor perceived responsibilities; Huntington disease testing; Prenatal testing; Presymptomatic testing of minors; Reproductive decision making

Indexed keywords

ADULT; ARTICLE; DECISION MAKING; FEMALE; GENETIC COUNSELING; GENETIC SCREENING; HUMAN; HUNTINGTON CHOREA; PATHOPHYSIOLOGY; PREGNANCY; REPRODUCTION; RISK FACTOR;

ADULT; DECISION MAKING; FEMALE; GENETIC COUNSELING; GENETIC TESTING; HUMANS; HUNTINGTON DISEASE; PREGNANCY; REPRODUCTION; RISK FACTORS;

EID: 77953067338     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-009-9265-5     Document Type: Article

References (38)

1. Bower, M. A., McCarthy Veach, P., Bartels, D. M., & LeRoy, B. S. (2002). A survey of genetic counselors' strategies for addressing ethical and professional challenges in practice. Journal of Genetic Counseling, 11, 163-186.
2. Burson, C. M., & Markey, K. R. (2001). Genetic counseling issues in predictive genetic testing for familial adult-onset neurologic diseases. Seminars in Pediatric Neurology, 8, 177-186.
3. Chong, S. S., Almqvist, E., Telenius, H., LaTray, L., Nichol, K., Bourdelat-Parks, B., et al. (1997). Contribution of DNA sequence and CAG size to mutation frequencies of intermediate alleles for Huntington disease: evidence from single sperm analyses. Human Molecular Genetics, 6, 301-309.
4. Creighton, S., Almqvist, E. W., MacGregor, D., Fernandez, B., Hogg, H., Beis, J., et al. (2003). Predictive, pre-natal and diagnostic genetic testing for Huntington's disease: the experience in Canada from 1987 to 2000. Clinical Genetics, 63, 462-475.
5. Decruyenaere, M., Evers-Kiebooms, G., Boogaerts, A., Philippe, K., Demyttenaere, K., Dom, R., et al. (2007). The complexity of reproductive decision-making in asymptomatic carriers of the Huntington mutation. European Journal of Human Genetics, 15, 453-462.
6. Downing, C. (2005). Negotiating responsibility: case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington disease. Journal of Genetic Counseling, 14, 219-234.
7. Duncan, R. E., & Delatycki, M. B. (2006). Predictive genetic testing in young people for adult-onset conditions: where is the empirical evidence? Clinical Genetics, 69, 7-20.
8. Duncan, R. E., Foddy, B., & Delatycki, M. B. (2006). Refusing to provide a prenatal test: can it ever be ethical? British Medical Journal, 333, 1066-1068.
9. Elger, B., & Harding, T. (2003). Huntington's disease: do future physicians and lawyers think eugenically? Clinical Genetics, 64, 327-338.
10. Ensenauer, R. E., Michels, V. V., & Reinke, S. S. (2005). Genetic testing: practical, ethical, and counseling considerations. Mayo Clinic Proceedings, 80, 63-73.
11. Hayden, M. R. (2000). Predictive testing for Huntington's disease: the calm after the storm. Lancet, 356, 1944-1945.
12. Hill, C. E., Thompson, B. J., & Williams, E. N. (1997). A guide to conducting consensual qualitative research. Counseling Psychology, 25, 517-572.
13. Hill, C. E., Knox, S., Thompson, B. J., Williams, E. N., Hess, S. A., & Ladany, N. (2005). Consensual Qualitative Research: an update. Journal of Counseling Psychology, 52, 196-205.
14. International Huntington Association and the World Federation of Neurology Research Group on Huntington's Chorea. (1994). Guidelines for the molecular genetics predictive test in Huntington's disease. Journal of Medical Genetics, 31, 555-559.
15. Kastrinos, F., Stoffel, E. M., Balmana, J., & Syngal, S. (2007). Attitudes toward prenatal genetic testing in patients with familial adenomatous polyposis. American Journal of Gastroenterology, 102, 1284-1290.
16. Kessler, S., Field, T., Worth, L., & Mosbarger, H. (1987). Attitudes of persons at risk for Huntington disease toward predictive testing. American Journal of Medical Genetics, 26, 259-270.
17. Klitzman, R., Thorne, D., Williamson, J., Chung, W., & Marder, K. (2007a). Decision-making about reproductive choices among individuals at-risk for Huntington's disease. Journal of Genetic Counseling, 16, 347-362.
18. Klitzman, R., Thorne, D., Williamson, J., & Marder, K. (2007b). The roles of family members, health care workers, and others in decision-making processes about genetic testing among individuals at risk for Huntington disease. Genetics in Medicine, 9, 358-371.
19. Lilani, A. (2005). Ethical issues and policy analysis for genetic testing: Huntington's disease as a paradigm for diseases with a late onset. Human Reproduction and Genetic Ethics, 11, 28-34.
20. Maat-Kievit, A., Vegter-van der Vlis, M., Zoeteweij, M., Losekoot, M., van Haeringen, A., Kanhai, H., et al. (1999). Experience in prenatal testing for Huntington's disease in The Netherlands: procedures, results and guidelines (1987-1997). Prenatal Diagnosis, 19, 450-457.
21. Markel, D. S., Young, A. B., & Penney, J. B. (1987). At-risk persons' attitudes toward presymptomatic and prenatal testing of Huntington disease in Michigan. American Journal of Medical Genetics, 26, 295-305.
22. Mastromauro, C., Myers, R. H., & Berkman, B. (1987). Attitudes toward presymptomatic testing in Huntington disease. American Journal of Human Genetics, 26, 271-282.
23. McCarthy Veach, P. M., Bartels, D. M., & LeRoy, B. S. (2001). Ethical and professional challenges posed by patients with genetic concerns: a report of focus group discussions with genetic counselors, physicians, and nurses. Journal of Genetic Counseling, 10, 97-119.
24. McCarthy Veach, P., Bartels, D. M., & LeRoy, B. S. (2007). Coming full circle: a reciprocal-engagement model of genetic counseling practice. Journal of Genetic Counseling, 16, 713-728.
25. McKinnon, W. C., Baty, B. J., Bennett, R. L., Magee, M., Neufeld-Kaiser, W. A., Peters, K. F., et al. (1997). Predisposition genetic testing for late-onset disorders in adults. A position paper of the National Society of Genetic Counselors. Journal of the American Medical Association, I8, 1217-1220.
26. Meissen, G. J., & Berchek, R. L. (1987). Intended use of predictive testing by those at risk for Huntington disease. American Journal of Medical Genetics, 26, 283-293.
27. Meissen, G. J., Mastromauro, C. A., Kiely, D. K., McNamara, D. S., & Myers, R. H. (1991). Understanding the decision to take the predictive test for Huntington disease. American Journal of Medical Genetics, 39, 404-410.
28. Menon, U., Harper, J., Sharma, A., Fraser, L., Burnell, M., ElMasry, K., et al. (2007). Views of BRCA gene mutation carriers on preimplantation genetic diagnosis as a reproductive option for hereditary breast and ovarian cancer. Human Reproduction, 22, 1573-1577.
29. National Society of Genetic Counselors.(1995). Position statement on prenatal and childhood testing for adult-onset disorders. www. nsgc.org {accessed April 4 2008}.
30. Patton, M. Q. (2001). Qualitative evaluation and research methods. Thousand Oaks: Sage.
31. Pencarinha, D. F., Bell, N. K., Edwards, J. G., & Best, R. G. (1992). Ethical issues in genetic counseling: a comparison of M.S. counselor and medical geneticist perspectives. Journal of Genetic Counseling, 1, 19-30.
32. Quaid, K. A., & Morris, M. (1993). Reluctance to undergo predictive testing: the case of Huntington disease. American Journal of Medical Genetics, 45, 41-45.
33. Rhodes, R. (2006). Why test children for adult-onset genetic diseases? Mount Sinai Journal of Medicine, 73, 609-616.
34. Roche, M. (2005). Genetic counseling considerations in molecular diagnosis. In W. B. Coleman & G. J. Tsongalis (Eds.), Molecular diagnostics: For the clinical laboratorian (pp. 525-544).
35. Totowa: Humana. Sivell, S., Elwyn, G., Gaff, C. L., Clarke, A. J., Iredale, R., Shaw, C., et al. (2008). How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review. Journal of Genetic Counseling, 17, 30-63.
36. Stern, H. J., Harton, G. L., Sisson, M. E., Jones, S. L., Fallon, L. A., Thorsell, L. P., et al. (2002). Non-disclosing preimplantation genetic diagnosis for Huntington disease. Prenatal Diagnosis, 22, 503-507.
37. Williams, J. K., Schutte, D. L., Evers, C. A., & Forcucci, C. (1999). Adults seeking presymptomatic gene testing for Huntington disease. Image: The Journal of Nursing Scholarship, 31, 109-114.
38. Zahm, K., McCarthy Veach, P., & LeRoy, B. S. (2008). An investigation of genetic counselor experiences in peer group supervision. Journal of Genetic Counseling, 17, 220-233.