Breast cancer survivors' attitudes about communication of breast cancer risk to their children

American Journal of Medical Genetics - Seminars in Medical Genetics

Volumn 119 C, Issue 1, 2003, Pages 45-50

  Miesfeldt, Susan ^a   Cohn, Wendy F ^a   Jones, Susan M ^b   Ropka, Mary E ^a   Weinstein, Jenine C ^a  

^a UNIVERSITY OF VIRGINIA HEALTH SYSTEM   (United States)

^b UNIVERSITY OF VIRGINIA   (United States)

Author keywords

Attitudes; Children; Concerns; Education; Families; Genetic counseling; Hereditary breast cancer

Indexed keywords

ADULT; AGE; ANAMNESIS; ATTITUDE; BREAST CANCER; CANCER RISK; CANCER SURVIVAL; CAUCASIAN; CONFERENCE PAPER; EDUCATION; FAMILIAL CANCER; FAMILY HISTORY; FEMALE; GENETIC COUNSELING; HEALTH CARE PERSONNEL; HEALTH SURVEY; HUMAN; INTERPERSONAL COMMUNICATION; MAJOR CLINICAL STUDY; MEDICAL INFORMATION; NEGRO; ONSET AGE; PRIORITY JOURNAL; QUESTIONNAIRE; SIBLING;

EID: 0041818170     PISSN: 15524825     EISSN: None     Source Type: Journal    
DOI: 10.1002/ajmg.c.10012     Document Type: Conference Paper

References (44)

1. American Academy of Family Physicians. 1999. AAFP core education guidelines: medical genetics. Am Fam Physician 60:305-307.
2. American Academy of Pediatrics, Committee on Bioethics. 2001. Ethical issues with genetic testing in pediatrics. Pediatrics 107:1451-1455.
3. American Society of Clinical Oncology. 1997. Resource document for curriculum development in cancer genetics education. J Clin Oncol 15:2157-2169.
4. American Society of Human Genetics, ASHG Information and Education Committee. 1995. Report from the medical school core curriculum in genetics. Am J Hum Genet 56:935-937.
5. American Society of Human Genetics Board of Directors and the American College of Medical Genetics Board of Directors. 1995. Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. Am J Hum Genet 57:1233-1241.
6. Biesecker BB, Boehnke M, Calzone K, et al. 1993. Genetic counseling for families with inherited susceptibility to breast and ovarian cancer. JAMA 269:1970-1974.
7. Bluman LG, Rimer BK, Berry DA, et al. 1999. Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2. J Clin Oncol 17:1040-1046.
8. Clarke A, Fielding D. Kerzin-Storrar L. 1994. The genetic testing of children. J Med Genet 31:785-797.
9. Cohen CB. 1998. Wrestling with the future: should we test children for adult-onset genetic conditions? Kennedy Inst Ethics J 8:111-130.
10. Collins FS. 1997. Preparing health professionals for the genetic revolution. JAMA 278:1285-1286.
11. Croyle RT, Lerman C. 1999. Risk communication in genetic testing for cancer susceptibility. J Natl Cancer Inst Monogr 25:59-66.
12. Dickenson DL. 1999. Can children and young people consent to be tested for adult onset genetic disorders? Br Med J 318:1063-1066.
13. Eiger BS, Harding TW. 2000. Testing adolescents for a hereditary breast cancer gene (BRCA1). Arch Pediatr Adolesc Med 154:113-119.
14. Fanos JH. 1997. Developmental tasks of childhood and adolescence: implications for genetic testing. Am J Med Genet 71:22-28.
15. Geller G, Notkin JR, Green MJ, et al. 1997. Genetic testing for susceptibility to adult-onset cancer: the process and content of informed consent. JAMA 277:1467-1474.
16. Hamann HA, Croyle RT, Venne VL, Baty BJ, Smith KR, Botkin JR. 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.
17. Harper PS, Clarke A. 1990. Should we test children for "adult" genetic diseases? Lancet 335:1205-1206.
18. Hofman KJ, Tambor ES, Chase GA, Geller G, Faden RR, Holtzman NA. 1993. Physicians' knowledge of genetics and genetic tests. Acad Med 68:625-632.
19. Hughes C, Gomez-Caminero A, Benkendorf J, et al. 1997. Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Educ Couns 32:51-62.
20. Hughes C, Lynch H, Durham C, Isaacs C. 1999. Communication of BRCA1/2 test results in hereditary breast cancer families. Cancer Res Ther Control 8:51-59.
21. Jacobsen PB, Valdimarsdottir HB, Brown KL, Offit K. 1997. Decision-making about genetic testing among women at familial risk for breast cancer. Psychosom Med 59:459-466.
22. Jones SM, Cohn WF, Miesfeldt S. 1997. Physicians need more education about inherited cancer predisposition. Acad Med 72:832-833.
23. Kodish ED. 1999. Testing children for cancer genes: the rule of earliest onset. J Pediatr 135:390-395.
24. Lerman C, Daly M, Masny A, Balshem A. 1994. Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncol 12:843-850.
25. Lerman C, Seay J, Balshem A, Audrain J. 1995a. Interest in genetic testing among first-degree relatives of breast cancer patients. Am J Med Genet 57:385-392.
26. Lerman C, Lustbader E, Rimer B, et al. 1995b. Effects of individualized breast cancer risk counseling: a randomized trial. J Natal Cancer Inst 87:286-292.
27. Lerman C, Narod S, Schulman K, et al. 1996. BRCA1 testing in families with hereditary breast-ovarian cancer: a prospective study of patient decision making and outcomes. JAMA 275:1885-1892.
28. Lerman C, Peshkin BN, Hughes C, et al. 1998. Family disclosure in genetic testing for cancer susceptibility: determinants and consequences. J Health Care Law Policy 1:353-372.
29. Lippman-Hand A, Fraser FC. 1979. Genetic counseling: the postcounseling period - I, parents' perceptions of uncertainty. Am J Med Genet 4:51-71.
30. Loader S, Levenkron JC, Rowley PT. 1998. Genetic testing for breast-ovarian cancer susceptibility: a regional trial. Genet Test 2:305-313.
31. McKinnon WC, Baty BJ, Bennett RL, et al. 1997. Predisposition testing for late-onset disorders in adults: a position paper of the National Society of Genetic Counselors. JAMA 278:1217-1220.
32. Meiser B, Butow P, Barratt A, et al. 2000. Attitudes to genetic testing for breast cancer susceptibility in women at increased risk of developing hereditary breast cancer. J Med Genet 37:472-476.
33. Michie S, Marteau TM. 1996. Predictive genetic testing in children: the need for psychological research. Br J Health Psychol 1:3-14.
34. Miesfeldt S, Jones SM, Cohn WF. 2001. Informed consent for BRCA1 and BRCA2 testing: what every clinician should know about the process and content. J Am Med Womens Assoc 55:275-279.
35. National Coalition for Health Professional Education in Genetics. 2001. Core competencies in genetics essential for all health care professionals. www.nchpeg.org: National Coalition for Health Professional Education in Genetics.
36. Pasacreta J. 1999. Psychosocial issues associated with increased breast and ovarian cancer risk: findings from focus groups. Arch Psychiatr Nurs 3:127-136.
37. Patenaude AF. 1996. The genetic testing of children for cancer susceptibility: ethical, legal, and social issues. Behav Sci Law 14:393-410.
38. Strong LC, Marteau T. 1995. Evaluating children and adolescents for heritable cancer risk. J Natl Cancer Inst Monogr 17:111-113.
39. Struewing JP, Lerman C, Kase RG, Giambarresi TR, Tucker MA. 1995. Anticipated uptake and impact of genetic testing in hereditary breast and ovarian cancer families. Cancer Epidemiol Biomarkers Prev 4:169-173.
40. Task Force on Genetic Testing, National Institutes of Health, Department of Energy Working Group on Ethical, Legal, and Social Implications of Human Genome Research, 1997. Promoting safe and effective genetic testing in the United States. Bethesda, MD: National Institutes of Health.
41. Tercyak KP, Streisand R, Peshkin BN, Lerman C. 2000. Psychosocial impact of predictive testing for illness on children and families: challenges for a new millennium. J Clin Psychol Med Settings 7:55-68.
42. Tercyak KP, Hughes C, Main D, et al. 2001. Parental communication of BRCA1/2 genetic test results to children. Patient Educ Couns 42:213-224.
43. Tessaro I, Borstelmann N, Regan K, Rinier BK, Winer E. 1997. Genetic testing for susceptibility to breast cancer: findings from women's focus groups. J Womens Health 6:317-332.
44. Wertz DC, Fanos JH, Reilly PR. 1994. Genetic testing for children and adolescents: who decides? JAMA 272:875-881.