Women's experiences of undergoing BRCA1 and BRCA2 testing: Organisation of the German hereditary breast and ovarian cancer consortium survey and preliminary data from Münster

Community Genetics

Volumn 6, Issue 4, 2003, Pages 249-258

  Nippert, Irmgard ^a,c   Schlegelberger, B ^c   Bastert, G ^c   Bender, H G ^c   Beckmann, M W ^c   Caffier, H ^c   Crohns, C ^c   Deininger, J ^c   Dietl, J ^c   Ditsch, N ^c   Distler, W ^c   Estevez Schwarz, L ^c   Hahn, U ^c   Hepp, H ^c   Herroder N ^c   Hubbel V ^c   Huttner C ^c   Jackisch, C ^c   Jonat, W ^c   Kandl, M ^c   Kast, K ^c   Kaufmann, M ^c   Kempe, A ^c   Kiechle, M ^c   Kreienberg, R ^c   Kuschel, B ^c   Luck, H ^c   Von Minckwitz, G ^c   Nestle Kramling C ^c   Prieshof, B ^c   Rensing, K ^c   Rhiem, K ^c   Schaffer M ^c   Schmutzler, R K ^c   Schwarz Boeger, U ^c   Straub, L ^c   Untch, M ^c   Volm, T ^c   Bartram, C R ^c   Bosse, K ^c   Debatin, I ^c   Fischer, B ^c   Froster, U ^c   Gadzicki, D ^c   Goecke, T ^c   Grimm, T ^c   Grote, W ^c   Harder, L ^c   Horn, D ^c   Horst, J ^c   Kreuz, F ^c   Langenbeck, U ^c   Neumann, T ^c   Propping, P ^c   Schafer D ^c   Schmidt, D ^c   Schroder J ^c   Siebert, R ^c   Sperling, K ^c   Strenge, S ^c   Vogel, W ^c   Voigtlander T ^c   Welling, B ^c   Arnemann, J ^c   Betz, B ^c   Bandick, K ^c   Bendig, I ^c   Dworniczak, B ^c   Eberhardt, E ^c   Hofmann, W ^c   Klaes, R ^c   Kujat, A ^c   Meindl, A ^c   Niederacher, D ^c   Preissler Adams, S ^c   Sadr Nabavi, A ^c   Scherneck, S ^c   Wappenschmidt, B ^c   Weber, B H F ^c   Bodnar, I ^c   Dahlbender, R ^c   Faller, H ^c   Fuchs, D ^c   Gebhardt, K ^c   Gerber, W D ^c   Gonnermann, A ^c   Von Der Groeben, Ch ^c   Henningsen, P ^c   Hoppe, S ^c   Jordan, J ^c   Rohde, A ^c   Sundermeier, A ^c   Vodermaier, A ^c   Wagner, U ^c   more..

^a UNIVERSITY HOSPITAL MÜNSTER   (Germany)

^b HANNOVER MEDICAL SCHOOL   (Germany)

^c NONE

Author keywords

BRCA1; BRCA2; Communication of test results; Genetic counselling; Predictive genetic testing

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN;

BREAST CANCER; CANCER DIAGNOSIS; DECISION MAKING; FAMILY; GENE MUTATION; GENETIC ANALYSIS; HEALTH SURVEY; HUMAN; INTERVIEW; OVARY CANCER; PATIENT COUNSELING; POPULATION GENETICS; PRACTICE GUIDELINE; PRIORITY JOURNAL; QUESTIONNAIRE; REVIEW;

EID: 4444314075     PISSN: 14222795     EISSN: None     Source Type: Journal    
DOI: 10.1159/000079387     Document Type: Review

References (22)

1. Eisinger F, Alby N, Bremond A, Dauplat J, Espié M, Janiaud P, Kuttenn F, Lebrun J-P, Lefranc J-P, Pierret J, Sobol H, Stoppa-Lyonnet D, Thouvenin D, Tristant H, Feingold J: Recommendations for medical management of hereditary breast and ovarian cancer: The French National Ad Hoc Committee. Ann Oncol 1998;9:939-950.
2. American Society of Clinical Oncology: American Society of Clinical Oncology Policy Statement Update: Genetic Testing for Cancer Susceptibility. ASCO Special Article. J Clin Oncol 2003;21:2397-2406.
3. Schmutzler R, Schlegelberger B, Meindl A, Gerber W-D, Kiechle M: Beratung, genetische Testung und Prävention von Frauen mit einer familiären Belastung für das Mamma- und Ovarialkarzinom. Interdisziplinäre Empfehlungen des Konsortium 'Familiärer Brust- und Eierstockkrebs' der Deutschen Krebshilfe. Med Genet 2003;4:385-395.
4. Meindl A; German Consortium for Hereditary Breast and Ovarian Cancer: Comprehensive analysis of 989 patients with breast or ovarian cancer provides BRCA1 and BRCA2 mutation profiles and frequencies for the German population. Int J Cancer 2002;97:472-480.
5. Lerman C, Schwartz M: Adherence and psychological adjustment among women at high risk of breast cancer. Breast Cancer Res Treat 1993;28:145-155.
6. Lerman C, Narod, Schulman K, Hughes C, Gomez-Caminero A, Bonney G, Gold K, Trock B, Main D, LynchJ, Fulmore C, Snyder C, Lemon SJ, Conway T, Tonin P, Lenoir G, Lynch H: BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes. JAMA 1996;275:1885-1892.
7. Lerman C, Hughes C, Lemon SJ, Main D, Snyder C, Durham C, Narod S, Lynch HT: What you don't know can hurt you: Adverse psychological effects in members of BRCA1 and BRCA2-linked families who decline testing. J Clin Oncol 1998;16:1650-1654.
8. Lerman C, Biesecker B, Benkendorf JL, Kerner J, Gomez-Caminero A, Hughes C, Reed MM: Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst 1997;89:148-157.
9. Decruyenaere M, Evers-Kiebooms G, Denayer L, Welkenhuysen M, Claes E, Legius E, Demyttenaere K: Predictive testing for hereditary breast and ovarian cancer: A psychological framework for pre-test counselling. Eur J Hum Genet 2000;8:130-136.
10. Metcalfe KA, Liede A, Hoodfar E, Scott A, Foulkes WD, Narod SA: An evaluation of needs for female BRCA2 and BRCA2 carriers undergoing genetic counselling. J Med Genet 2000;37:866-874.
11. Lynch HT, Lemon SJ, Durham C, Tinley ST, Connolly C, Lynch JF, Surdam J, Orinion E, Slominski-Caster S, Watson P, Lerman C, Tonin P, Lenoir G, Serova O, Narod S: A descriptive study of BRCA1 testing and reactions to disclosure of test results. Cancer 1997;79:2219-2228.
12. Lynch HT, Watson P, Tinley S, Snyder C, Durham C, Lynch J, Kirnarsky Y, Serova O, Lenoir G, Lerman C, Narod SA: An update on DNAbased BRCA1/BRCA2 genetic counselling in hereditary breast cancer. Cancer Genet Cytogenet 1999;109:91-98.
13. Smith KR, West JA, Croyle RT, Botkin JR: Familial context of genetic testing for cancer susceptibility: Moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev 1999;8:385-392.
14. Julian-Reynier C, Eisinger F, Vennin P, Chabal F, Aurran Y, Nogues C, Bignon YL, Machelard-Roumagnac M, Maugard-Louboutin C, Serin D, Blanc B, Orsoni P, Sobol H: Attitudes towards cancer predictive testing and transmission of information to the family. J Med Genet 1996;33:731-736.
15. Julian-Reynier C, Eisinger F, Chabal F, Lasset C, Nogues C, Stoppa-Lyonnet D, Vennin P, Sobol H: Disclosure to the family of breast/ ovarian cancer genetic test results: Patient's willingness and associated factors. Am J Med Genet 2000;94:13-18.
16. Wagner Costalas J, Itzen M, Malick J, Babb JS, Bove B, Godwin AK, Daly MB: Communication of BRCA1 and BRCA2 results to at-risk relatives: A cancer risk assessment program's experience. Am J Med Genet 2003;119C:11-18.
17. Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod S, Corio C, Tercyak KP, Hanna D, Isaacs C, Main D: All in the family: Evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet 2002;107:143-150.
18. Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E: Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet 2003;116A:11-19.
19. King MC, Marks JH, Mandell JB; New York Breast Cancer Study Group: Breast and ovarian cancer risks due to inherited mutations in BRCA1 and BRCA2. Science 2003;302:643-646.
20. Wooster R, Weber BL: Breast and ovarian cancer. N Engl J Med 2003;348:2339-2347.
21. Rebbeck TR, Lynch HT, Neuhausen SL, Narod SA, van't Veer L, Garber JE, Evans G, Isaacs C, Daly MB, Matloff E, Olopade OI, Weber BL; Prevention and Observation of Surgical End Points Study Group: Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med 2002;346:1616-1622.
22. Kauff ND, Satagopan JM, Robson ME, Scheuer L, Hensley M, Hudis CA, Ellis NA, Boyd J, Borgen PI, Barakat RR, Norton L, Offit K: Risk-reducing salpingo-oophorectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med 2002;346:1609-1615.