"Family matters": A conceptual framework for genetic testing in children

Journal of Genetic Counseling

Volumn 13, Issue 1, 2004, Pages 9-29

  McConkie Rosell, Allyn ^a   Spiridigliozzi, Gail A ^a  

^a DUKE UNIVERSITY MEDICAL CENTER   (United States)

Author keywords

Bioethics; Family system theory; Genetic counseling; Genetic testing in children

Indexed keywords

CHILD; CONCEPT FORMATION; DIAGNOSTIC PROCEDURE; FAMILY COUNSELING; GENETIC COUNSELING; GENETIC PROCEDURES; HETEROZYGOTE; HUMAN; LABORATORY TEST; MEDICAL ETHICS; MEDICAL INFORMATION; PEDIATRICS; PRACTICE GUIDELINE; REVIEW; SCIENCE; STRESS; ADOLESCENT; ETHICS; FAMILY HEALTH; FAMILY RELATION; GENETIC DISEASES, INBORN; GENETIC SCREENING; MENTAL STRESS; MINOR (PERSON); PERSONAL AUTONOMY; PROCEDURES;

ADOLESCENT; CHILD; FAMILY HEALTH; FAMILY RELATIONS; GENETIC COUNSELING; GENETIC DISEASES, INBORN; GENETIC TESTING; HUMANS; MINORS; PERSONAL AUTONOMY; STRESS, PSYCHOLOGICAL;

EID: 3543146182     PISSN: 10597700     EISSN: None     Source Type: Journal    
DOI: 10.1023/B:JOGC.0000013379.90587.ef     Document Type: Review

References (64)

1. Anonymous (1987). Consensus conference. Newborn screening for sickle cell disease and other hemoglobinopathies. JAMA, 258, 1205-1209.
2. American Society of Human Genetics/American College of Medical Genetics (1995). Report: Points-to-consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. Am J Hum Genet, 57, 1233-1241.
3. Beauchamp, T. L. (1994). The "four principles" approach. In R. Gillon (Ed.), Principles of health care ethics (pp. 2-12). New York: Wiley.
4. Becvar, N. J., & Becvar, D. S. (1982). Family systems theory: Background and implications. J Commun, 32, 99-107.
5. Bernhardt, B., Ellen, T., Fraser, G., Wissow, L., & Geller, G. (2003). Parent's and children's attitudes toward the enrollment of minors in genetic susceptibility research: Implications for Informed consent. Am J Med Genet, 116A, 315-322.
6. Binedell, J., Solden, J., Scourfield, J., & Harper, P. (1996). Huntington's disease predictive testing: The case for an assessment approach to requests from adolescents. J Med Genet, 33, 912-915.
7. Boss, P. (1988). Family stress management (Vol. 8). Newbury Park, CA: Sage.
8. Bunn, J., Bosompra, K., Ashikaga, T., Flynn, B., & Worden, J. (2002). Factors influencing intention to obtain a genetic test for colon cancer risk: A Population-based study. Preventive Medicine, 34, 567-577.
9. Burt, R. W. (2000). Colon cancer screening. Gastroentemlogy, 119, 837-853.
10. Cheuvront, B., Sorensen, J., Callanan, N., Stearns, S., & DeVellis, B. (1998). Psychosocial and educational outcomes associated with home- and clinic-based pretest education and cystic fibrosis carrier testing among a population of at-risk relatives. Am J Med Genet, 75(5), 461-468.
11. Clarke, A., & Flinter, F. (1996). The genetic testing of children: A clinical perspective. In T. Marteau & M. Richards (Eds.), The troubled helix: Social and psychological implications of the new human genetics (pp. 164-183). New York: Cambridge University Press.
12. Clarke, A. J. (1997). The genetic testing of children. In P. S. Harper & A. J. Clarke (Eds.), Genetics society and clinical practice (pp. 15-29). Herndon, VA: BIOS Scientific.
13. Clarke, A. (Ed.) (1998). The genetic testing of children. Washington, DC: Bios Scientific.
14. Codori, A.-M., Zawacki, K., Petersen, G., Miglioretti, D., Bacon, J., Trimbath, J., et al. (2003). Genetic testing for hereditary colorectal cancer in children: Long-term psychological effects. Am J Med Genet, 116A, 117-128.
15. Corbetta, C., Seia, M., Bassotti, A., Ambrosioni, A., Guinta, A., & Padoan, R. (2002). Screening for cystic fibrosis in newborn infants: Results of a pilot programme based on a two tier protocol (IRT/DNA/IRT) in the Italian population. Journal of Medical Screening, 9, 60-63.
16. Day, R. D. (1995). Family-systems theory. In R. D. Day, K. R. Gilbert, B. H. Settles, & W. R. Burr (Eds.), Research and theory in family science (pp. 91-111). Pacific Grove, CA: Brooks/Cole Publishing.
17. Donaldson, T. (1993). Morally privileged relationships. In D. T. Meyers, K. Kipnis, & C. F. Murphy (Eds.), Kindred matters: Rethinking the philosophy of the family (pp. 21-10). Ithaca, NY: Cornell University Press.
18. Elger, B. S., & Harding, T. W. (2000). Testing adolescents for a hereditary breast cancer gene (BRCA1): Respecting their autonomy is in their best interest. Arch Pediatr Adolesc Med, 154, 113-119.
19. Evers-Kiebooms, G., & Decruyenaere, M. (1998). Predictive testing for Huntington's disease: A challenge for persons at risk and for professionals. Patient Educ Counsel, 35, 15-26.
20. Fanos, J., & Johnson, J. (1992). Still living with cystic fibrosis. The well sibling revisited. Pediatr Pulmonol Suppl, 8, 228-229.
21. Fanos, J. H. (1997). Developmental tasks of childhood and adolescence: Implications for genetic testing. Am J Med Genet, 71, 22-28.
22. Fanos, J. H., & Gatti, R. A. (1999). A mark on the arm: Myths of carrier status in sibs of individuals with ataxia-telangiectasia. Am J Med Genet, 86, 338-346.
23. Fanos, J. H., & Johnson, J. P. (1995). Barriers to carrier testing for adult cystic fibrosis sibs: The importance of not knowing. Am J Med Genet, 59, 85-91.
24. Fitzpatrick, M., & Ritchie, L. (Eds.) (1992). Communication theory and the family. New York: Plenum.
25. Grody, W. W., Cutting, G. R., Klinge, K. W., Richards, C. S., Watson, M. S., Robert J. Desnick, et al. (2001). CF3: Cystic fibrosis carrier screening, laboratory standards and guidelines for population based cystic fibrosis screening. Genet Med, 3(2), 149-154.
26. Hamann, H., Croyle, R. T., Venne, V. L., Baty, B. J., Smith, K. R., & Botkin, J. R. (2000). Attitudes toward the genetic testing of children among adults in a Utah-based kindred tested for a BRCA1 mutation. Am J Med Genet, 92, 25-32.
27. Hare, R. M. (1994). Utilitarianism and deontological principles. In R. Gillon (Ed.), Principles of health care ethics (pp. 149-157). New York: Wiley.
28. Hill, R. (1958). Social stresses on the family. I. Generic features of families under stress. Soc Casework, 49, 139-150.
29. Huntington's Disease Society of America (1994). Guidelines for genetic testing for Huntington's Disease. New York: Huntington's Disease Society of America.
30. Jarvinen, O., Aalto, A.-M., Lehesjoki, A.-E., Lindlof, M., Soderling, I., Uutela, A., et al. (1999). Carrier testing of children for two X linked diseases in a family based setting: A retrospective long term psychosocial evaluation. J Med Genet, 36, 615-620.
31. Jones, P. M., & Bennett, M. (2002). The changing face of newborn screening: Diagnosis of inform errors of metabolism by tandem mass spectrometry. Clin Chim Acta, 324, 121-128.
32. Kliewer, W., Fearnow, M. D., & Miller, P. A. (1996). Coping socialization in middle childhood: Tests of maternal and paternal influence. Child Dev, 67, 2339-2357.
33. Levy, H. L., & Albers, S. (2000). Genetic screening of newborns. Ann Rev Genom Hum Genet, 7(1), 139-177.
34. Nelson, H. & Nelson, J. (1995). The patient in the family: An ethics of medicine and families. New York: Routledge.
35. McConkie-Rosell A, Spiridigliozzi GA, Dawson D, Sullivan JA, & Lachiewicz A. M. (2002). Carrier testing in fragile X syndrome: When to tell and test. Am J Med Genet, 110, 36-44.
36. McConkie-Rosell, A., Spiridigliozzi, G. A., Iafolla, T., Tarleton, J., & Lachiewicz, A. M. (1997). Carrier testing in the fragile X syndrome. Am J Med Genet, 68, 62-69.
37. McConkie-Rosell, A., Spiridigliozzi, G. A., Rounds, K., Dawson, D., Sullivan, J. A., Burgess, D., et al. (1999). Parental attitudes regarding carrier testing in children at-risk for fragile X syndrome. Am J Med Genet, 82, 206-211.
38. McCubbin, H. I., & Patterson, J. (1982). Family adaptation to crises. In H. I. McCubbin, A. E. Cauble, & J. M. Patterson (Eds.), Family stress, coping, and social support. Springfield, OH: Charles C. Thomas.
39. McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (1996). Family assessment: Resiliency, coping, and adaptation. Madison, WI: University of Wisconsin Publishers.
40. Michie, S. (1996). Predictive genetic testing in children: Paternalism or empiricism? In T. Marteau & M. Richards (Eds.), The troubled helix: Social and psychological implications of the new human genetics (pp. 177-183). New York: Cambridge University Press.
41. Michie, S., Bobrow, M., & Marteau, T. M. (2001). Predictive genetic testing in children and adults: a study of emotional impact. J Med Genet, 38, 519-526.
42. Michie, S., & Marteau, T. (1996). Predictive genetic testing in children: The need for psychological research. Br J Health Psychol, 1(1), 3-14.
43. Miller, P. A., Kliewer, W., Hepworth, J. T., Sandler, I. N. (1994) Maternal socialization of children's postdivorce coping: Development of a measurement model. J Appl Dev Psychol, 15, 457-487.
44. McKernon, W. L., Holmbeck, G. N., Colder, C. R., Hommeyer, J. S., Shapera, W., & Westhoven, V. (2001). Longitudinal study of observed and perceived family influences on problem-focused coping behaviors of preadolescents with spina bifida. J Pediat Psychol, 26, 41-54.
45. Narzi, L., Lucarelli, M., Lelli, A., Grandoni, F., Cicero, S. L., Ferraro, A., et al. (2002). Comparison of two different protocols of neonatal screening for cystic fibrosis. Clin Genet, 91(3), 82-87.
46. National Society of Genetic Counselors (1995). Resolutions ballot: Prenatal and childhood testing for adult-onset disorders. Wallingford, PA: National Society of Genetic Counselors.
47. National Society of Genetic Counselors (1992). Code of ethics. Available at http://www. nsgc.org/about/code_of_ethics.asp
48. Park, V., Howard-Peebles, P., Sherman, S., Taylor, A., & Wulfsberg, E. (1994). Policy statement: American college of medical genetics: Fragile X syndrome: Diagnostic and carrier testing. Am J Med Genet, 53, 380-381.
49. Patterson, J. M., & Garwick, A. W. (1994). Levels of meaning in family stress theory. Fam Proc, 33, 287-304.
50. Petersen, G., Slack, J., & Nakamura, Y. (1991). Screening guidelines and premorbid diagnosis of familial adenomatous polyposis using linkage. Gastroenterology, 100, 1658-1664.
51. Report of the Working Party of the Clinical Genetics Society (1994). The genetic testing of children. J Med Genet, 31, 785-797.
52. Richards, M. (1998). Annotation: Genetic research, family life, and clinical practice. J Child Psychol Psychiatry, 39(1), 291-305.
53. Robertson, S., & Savulescu, J. (2001). Is there a case in favor of predictive genetic testing in young children? Bioethics, 15, 26-49.
54. Ross, L., & Moon, M. (2000). Ethical issues in genetic testing of children. Arch Pediatr Adolesc Med, 154, 873-879.
55. Simpson, S., & Harper, P. S. (2001). Prenatal testing for Huntington's disease: Experience within the UK 1994-1998. J Med Genet, 38, 333-335.
56. Smith, P. (1993). Family responsibility and the nature of obligation. In D. T. Meyers, K. Kipnis, & C. F. Murphy (Eds.), Kindred matters: Rethinking the philosophy of the family (pp. 74-89). Ithaca, NY: Cornell University Press.
57. Stone, H. W., & Miles, R. (1999). Moral direction in genetic counseling: Prenatal testing and Huntington disease. Fam Sys Health, 17, 75-85.
58. Tercyak, K., Peshkin, B., Streisand, R., & Lerman, C. (2001a). Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-Oncology, 10, 336-346.
59. Tercyak, K., Hughes, C., Main, D., Snyder, C., Lynch, J., Lynch, H., et al. (2001b). Parental communication of BRCA1/2 genetic test results to children. Patient Educ Counsel, 42, 213-224.
60. Varekamp, I., Suurmeijer, T., Brocker-Vriends, A., Dijck, H. V., Smit, C., Rosendaal, F., et al. (1990). Carrier testing and prenatal diagnosis for hemophilia: Experiences and attitudes of 549 potential and obligate carriers. Am J Med Genet, 37, 147-154.
61. Wertz, D. C., Fanos, J. H., & Reilly, P. R. (1994). Genetic testing for children and adolescents - Who decides? J Am Med Assoc, 272(11), 875-881.
62. Wheeler, P., Smith, R., Dorkin, H., Parad, R., Comeau, A., & Bianchi, D. (2001). Genetic counseling after implementation of statewide cystic fibrosis newborn screening: Two years' experience in one medical center. Genet Med, 3(6), 411-415.
63. White, J. M., & Klein, D. M. (2002). Family theories. Thousand Oaks, CA: Sage.
64. Wolpe, P. R. (1998). The triumph of autonomy in American bioethics: A sociological view. In R. DeVries & J. Subedi (Eds.), Bioethics and society: Constructing the ethical enterprise (pp. 38-59). Upper Saddle River, NJ: Prentice-Hall.