Presymptomatic Genetic Testing in Children for Neurofibromatosis 2

Journal of Pediatric Nursing

Volumn 23, Issue 3, 2008, Pages 183-194

  Twomey, John G ^a,b,c   Bove, Catherine ^a,b,c   Cassidy, Deborah ^a,b,c  

^a MGH INSTITUTE OF HEALTH PROFESSIONS   (United States)

^b MASSACHUSETTS GENERAL HOSPITAL   (United States)

^c BOSTON COLLEGE   (United States)

Author keywords

Bioethics; Genetic counseling; Genetics; Neurofibromatosis

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; ATTITUDE TO HEALTH; CHILD; CONFLICT; DECISION MAKING; EDUCATION; ETHICAL THEORY; ETHICS; FEMALE; GENETIC COUNSELING; GENETIC SCREENING; GENETICS; HUMAN; INFANT; MALE; MIDDLE AGED; NEUROFIBROMATOSIS; NURSE ATTITUDE; NURSING METHODOLOGY RESEARCH; PARENT; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; QUESTIONNAIRE; UNCERTAINTY; VERBAL COMMUNICATION;

ADOLESCENT; ADULT; ATTITUDE TO HEALTH; CHILD; CHILD, PRESCHOOL; CONFLICT (PSYCHOLOGY); DECISION MAKING; ETHICAL THEORY; FEMALE; GENETIC COUNSELING; GENETIC SCREENING; HUMANS; INFANT; MALE; MIDDLE AGED; NARRATION; NEUROFIBROMATOSIS 2; NURSE'S ROLE; NURSING METHODOLOGY RESEARCH; PARENTS; PRINCIPLE-BASED ETHICS; QUALITATIVE RESEARCH; QUESTIONNAIRES; UNCERTAINTY;

EID: 43449085188     PISSN: 08825963     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.pedn.2006.11.002     Document Type: Article

References (61)

1. Ackerman T.F. The ethics of drug research in children. Paediatric Drugs 3 (2001) 29-41
2. American Academy of Pediatrics. Ethical issues with genetic testing in pediatrics. Pediatrics 107 (2001) 1451-1455
3. Ayres L. Narratives of family caregiving: Four story types. Research in Nursing & Health 23 (2000) 359-371
4. Ayres L., Kavanaugh K., and Knafl K.A. Within-case and across-case approaches to qualitative data analysis. Qualitative Health Research 13 (2003) 871-883
5. Ayres L., and Poirier S. Focus on qualitative methods. Virtual text and the growth of meaning in qualitative analysis. Research in Nursing & Health 19 (1996) 163-169
6. Baser M.E., Friedman J.M., Wallace A.J., Ramsden R.T., Joe H., and Evans D.G. Evaluation of clinical diagnostic criteria for neurofibromatosis 2. Neurology 59 (2002) 1759-1765
7. Beauchamp T., and Childress J. Principles of biomedical ethics. 5th ed (2001), Oxford University Press, New York
8. Bishop A., and Scudder J. The practical, moral, and personal sense of nursing (1990), State University of New York Press, New York
9. Canadian Paediatric Society. The genetic testing of children. Accessed on 11 Oct 2006, from (2003). http://www.cps.ca/english/statements/B/b03-01.htm
10. Cappelli M., Verma S., Korneluk Y., Hunter A., Tomiak E., Allanson J., et al. Psychological and genetic counseling implications for adolescent daughters of mothers with breast cancer. Clinical Genetics 67 (2005) 481-491
11. Cassidy D.A., and Bove C.M. Factors perceived to influence parental decision-making regarding presymptomatic testing of children at risk for treatable adult-onset genetic disorders. Issues in Comprehensive Pediatric Nursing 21 (1998) 19-34
12. Clayton E.W. Removing the shadow of the law from the debate about genetic testing of children. American Journal of Medical Genetics 57 (1995) 630-634
13. Clinical Genetics Society. Guidelines for genetic testing of healthy children. Accessed on 11 Oct 2006 from (1994). http://www.clingensoc.org/Docs/Testing_of_Children1994.pdf
14. Codori A.M., Zawacki K.L., Petersen G.M., Miglioretti D.L., Bacon J.A., Trimbath J.D., et al. Genetic testing for hereditary colorectal cancer in children: Long-term psychological effects. American Journal of Medical Genetics 116A (2003) 117-128
15. Cohen C.B. Wrestling with the future: Should we test children for adult-onset genetic conditions?. Kennedy Institute of Ethics Journal 8 (1998) 111-130
16. Cooper M.C. Principle-oriented ethics and the ethic of care: A creative tension. Advances in Nursing Science 14 (1991) 22-31
17. Duncan R.E., and Delatycki M.B. Predictive genetic testing in young people for adult-onset conditions: Where is the empirical evidence?. Clinical Genetics 69 (2006) 8-16 (discussion 17-20)
18. Evans D. Neurofibromatosis 2. GeneReviews at geneTests: medical genetics information resource (2006), University of Washington, Seattle. http://www.genetests.org (Accessed on 11 Oct 2006)
19. Evans J.H. A sociological account of the growth of principlism. Hastings Center Report 30 (2000) 31-38
20. Fanos J.H., and Johnson J.P. Barriers to carrier testing for adult cystic fibrosis sibs: The importance of not knowing. American Journal of Medical Genetics 59 (1995) 85-91
21. Fanos J.H., and Johnson J.P. Perception of carrier status by cystic fibrosis siblings. American Journal of Human Genetics 57 (1995) 431-438
22. Fanos J.H., and Mackintosh M.A. Never again joy without sorrow: The effect on parents of a child with ataxia-telangiectasia. American Journal of Medical Genetics 87 (1999) 413-419
23. Fryer A. Inappropriate genetic testing of children. Archives of Disease in Childhood 83 (2000) 283-285
24. Gallo A.M., Angst D., Knafl K.A., Hadley E., and Smith C. Parents sharing information with their children about genetic conditions. Journal of Pediatric Health Care 19 (2005) 267-275
25. Geller G., Tambor E.S., Bernhardt B.A., Fraser G., and Wissow L.S. Informed consent for enrolling minors in genetic susceptibility research: A qualitative study of at-risk children's and parents' views about children's role in decision-making. [erratum appears in J Adolesc Health. 2003 Jul;33(1):49]. Journal of Adolescent Health 32 (2003) 260-271
26. Gilligan C. In a different voice (1993), Harvard University Press, Cambridge (Mass)
27. Grosfeld F.J., Lips C.J., Beemer F.A., van Spijker H.G., Brouwers-Smalbraak G.J., and ten Kroode H.F. Psychological risks of genetically testing children for a hereditary cancer syndrome. Patient Education and Counseling 32 (1997) 63-67
28. Hamann H.A., Croyle R.T., Venne V.L., Baty B.J., Smith K.R., and Botkin J.R. Attitudes toward the genetic testing of children among adults in a Utah-based kindred tested for a brca1 mutation. American Journal of Medical Genetics 92 (2000) 25-32
29. Harman L.B. Attitudes toward genetic testing: Gender, role, and discipline. Topics in Health Information Management 24 (2003) 50-58
30. Harris J. Introduction. In: Harris J. (Ed). Bioethics (2001), Oxford University Press, New York 1-24
31. Harsh G.R., MacCollin M., McKenna M.J., Nadol J.B., Ojemann R., and Short M.P. Molecular genetic screening for children at risk of neurofibromatosis 2. Archives of Otolaryngology-Head & Neck Surgery 121 (1995) 590-591
32. Hoedemaekers R. Predictive genetic screening and the concept of risk. In: Clarke A. (Ed). The genetic testing of children (1998), BIOS, Oxford (UK) 237-264
33. Hoffmann D.E., and Wulfsberg E.A. Testing children for genetic predispositions: Is it in their best interest?. Journal of Law, Medicine & Ethics 23 (1995) 331-344
34. Jarvinen O., Hietala M., Aalto A.M., Arvio M., Uutela A., Aula P., et al. A retrospective study of long-term psychosocial consequences and satisfaction after carrier testing in childhood in an autosomal recessive disease: Aspartylglucosaminuria. Clinical Genetics 58 (2000) 447-454
35. Jarvinen O., Lehesjoki A.E., Lindlof M., Uutela A., and Kaariainen H. Carrier testing of children for two x-linked diseases: A retrospective study of comprehension of the test results and social and psychological significance of the testing. Pediatrics 106 (2000) 1460-1465
36. Kluwe L., Nygren A.O., Errami A., Heinrich B., Matthies C., Tatagiba M., et al. Screening for large mutations of the NF2 gene. Genes Chromosomes Cancer 42 (2005) 384-391
37. Lerman C., Narod S., Schulman K., Hughes C., Gomez-Caminero A., Bonney G., et al. BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes. Journal of the American Medical Association 275 (1996) 1885-1892
38. Lessick M., and Faux S. Implications of genetic testing of children and adolescents. Holistic Nursing Practice 12 (1998) 38-46
39. McCarthy J. Principlism or narrative ethics: Must we choose between them?. Medical Humanities 29 (2003) 65-71
40. MacCollin M., and Mautner V.F. The diagnosis and management of neurofibromatosis 2 in childhood. Seminars in Pediatric Neurology 5 (1998) 243-252
41. McConkie-Rosell A., and Spiridigliozzi G.A. "Family matters": A conceptual framework for genetic testing in children. Journal of Genetic Counseling 13 (2004) 9-29
42. Michie S., Bobrow M., and Marteau T.M. Predictive genetic testing in children and adults: A study of emotional impact. Journal of Medical Genetics 38 (2001) 519-526
43. Miles M., and Huberman A. Qualitative data analysis: An expanded sourcebook. 2nd ed. (1994), Sage, Thousand Oaks
44. Noddings N. Caring: a feminine approach to ethics and moral education (2003), University of California Press, Berkeley
45. Patenaude A.F. The genetic testing of children for cancer susceptibility: Ethical, legal, and social issues. Behavioral Sciences & the Law 14 (1996) 393-410
46. Pelias M.K. Genetic testing of children for adult-onset diseases: Is testing in the child's best interests?. Mount Sinai Journal of Medicine 73 (2006) 605-608
47. Poirier S., and Ayres L. Focus on qualitative methods. Endings, secrets, and silences: Overreading in narrative inquiry. Research in Nursing & Health 1997 20 (1997) 551-557
48. Rhodes R. Why test children for adult-onset genetic diseases?. Mount Sinai Journal of Medicine 73 (2006) 609-616
49. Rosen W.M. Attitudes of pediatric residents toward ethical issues associated with genetic testing in children. Pediatrics 110 (2002) 360-363
50. Ross L.F., and Moon M.R. Ethical issues in genetic testing of children. Archives of Pediatrics and Adolescent Medicine 154 (2000) 873-879
51. Sandelowski M. Telling stories: Narrative approaches in qualitative research. Image-The Journal of Nursing Scholarship 23 (1991) 161-166
52. Sherwin S. No longer patient Feminist ethics and health care (1992), Temple University Press, Philadelphia
53. Tercyak K.P., Peshkin B.N., Streisand R., and Lerman C. Psychological issues among children of hereditary breast cancer gene (brca1/2) testing participants. Psycho-Oncology 10 (2001) 336-346
54. The American Society of Human Genetics Board of Directors, and The American College of Medical Genetics Board of Directors. Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics 57 (1995) 1233-1241
55. Toulmin S. The tyranny of principles. Hastings Center Report 11 (1981) 31-39
56. Twomey J. Genetic testing of children: Confluence or collision between parents and professionals?. AACN Clinical Issues 13 (2002) 557-566
57. Twomey J. Issues in genetic testing in childhood. MCN. The American Journal of Maternal/Child Nursing 31 (2006) 156-163
58. Wertz D.C. Ethical issues in pediatric genetics: Views of geneticists, parents and primary care physicians. Health Law Journal 6 (1998) 3-42
59. Wertz D.C., Fanos J.H., and Reilly P.R. Genetic testing for children and adolescents. Who decides?. Journal of the American Medical Association 272 (1994) 875-881
60. Wertz D.C., and Reilly P.R. Laboratory policies and practices for the genetic testing of children: A survey of the helix network. American Journal of Human Genetics 61 (1997) 1163-1168
61. Williams J.K., Skirton H., and Masny A. Ethics, policy, and educational issues in genetic testing. Journal of Nursing Scholarship 38 (2006) 119-125