Advanced search
Publication Cover
Acta Oncologica Volume 42, 2003 - Issue 4
Journal homepage
774
Views
46
CrossRef citations to date
0
Altmetric
Research Article

Psychosocial Issues in Cancer Genetics

Eveline M. A. Bleiker Division of Psychosocial Research and Epidemiology, Department of Psychosocial Support Family Cancer Clinic, The Netherlands Cancer Institute Amsterdam
,
Daniela E. E. Hahn Division of Psychosocial Research and Epidemiology, Department of Psychosocial Support Family Cancer Clinic, The Netherlands Cancer Institute Amsterdam
&
Neil K. Aaronson Division of Psychosocial Research and Epidemiology, Department of Psychosocial Support Family Cancer Clinic, The Netherlands Cancer Institute Amsterdam
Pages 276-286 | Published online: 08 Jul 2009

  • Venter JC, Adams MD, Myers EW, et al. The sequence of the human genome. Science 2001; 291: 1304-51.
  • Lander ES, Linton LM, Birren B, et al. Initial sequencing and analysis of the human genome. Nature 2001; 409: 860-921.
  • Coyne JC, Benazon NR, Gaba CG, Calzone K, Weber BL. Distress and psychiatric morbidity among women from highrisk breast and ovarian cancer families. J Consult Clin Psychol 2000; 68: 864-74.
  • Marteau TM, Croyle RT. The new genetics. Psychological responses to genetic testing. Br Med J 1998; 316: 693-6.
  • Craufurd D, Dodge A, Kerzin-Storrar L, Harris R. Uptake of presymptomatic predictive testing for Huntington's disease. Lancet 1989; 2: 603-5.
  • Aktan-Collan K, Mecklin JP, Jarvinen H, et al. Predictive genetic testing for hereditary non-polyposis colorectal cancer: uptake and long-term satisfaction. Int J Cancer 2000; 89: 4450.
  • Julian-Reynier C, Sobol H, Sevilla C, Nogues C, Bourret P. Uptake of hereditary breast/ovarian cancer genetic testing in a French national sample of BRCA1 families. The French Cancer Genetic Network. Psychooncology 2000; 9: 504-10.
  • Hagoel L, Dishon S, Almog R, Silman Z, Bisland-Becktell S, Rennert G. Proband family uptake of familial-genetic counselling. Psychooncology 2000; 9: 522-7.
  • Meijers-Heijboer EJ, Verhoog LC, Brekelmans CT, et al. Presymptomatic DNA testing and prophylactic surgery in families with a BRCAl or BRCA2 mutation. Lancet 2000; 355: 2015-20.
  • Lerman C, Narod S, Schulman K, et al. BRCAl testing in families with hereditary breast-ovarian cancer, a prospective study of patient decision making and outcomes. JAMA 1996; 275: 1885-92.
  • Lerman C, Schwartz MD, Lin TH, Hughes C, Narod S, Lynch HT. The influence of psychological distress on use of genetic testing for cancer risk. J Consult Clin Psychol 1997; 65: 41420.
  • Patenaude AF, Schneider KA, Kiefler SA, et al. Acceptance of invitations for p53 and BRCAl predisposition testing: factors influencing potential utilization of cancer genetic testing. Psycho-oncology 1996; 5: 241-50.
  • Biesecker BB, Ishibe N, Hadley DW, et al. Psychosocial factors predicting BRCA1/BRCA2 testing decisions in members of hereditary breast and ovarian cancer families. Am J Med Genet 2000; 93: 257-63.
  • Cappelli M, Surh L, Humphreys L, et al. Psychological and social determinants of women's decisions to undergo genetic counseling and testing for breast cancer. Clin Genet 1999; 55: 419-30.
  • Julian-Reynier CM, Bouchard LJ, Evans DG, et al. Women's attitudes toward preventive strategies for hereditary breast or ovarian carcinoma differ from one country to another: differences among English, French, and Canadian women. Cancer 2001; 92: 959-68.
  • Hodgson SV, Haites NE, Caligo M, et al. A survey of the current clinical facilities for the management of familial cancer in Europe. European Union BIOMED II Demonstration Project: Familial Breast Cancer: audit of a new development in medical practice in European centres. J Med Genet 2000; 37: 605-7.
  • Geller G, Doksum T, Bernhardt BA, Metz SA. Participation in breast cancer susceptibility testing protocols: influence of recruitment source, altruism, and family involvement on women's decisions. Cancer Epidemiol Biomarkers Prev 1999; 8: 377-83.
  • Croyle RT, Lerman C. Risk communication in genetic testing for cancer susceptibility. J Natl Cancer Inst Monogr 1999; 25: 59-66.
  • Bleiker EM, Aaronson NK, Menko FH, et al. Genetic counseling for hereditary cancer: a pilot study on experiences of patients and family members. Patient Educ Couns 1997; 32: 107-16.
  • Kash KM. Psychosocial and ethical implications of defining genetic risk for cancers. Ann NY Acad Sci 1995; 768: 41-52.
  • Broadstock M, Michie S, Marteau T. Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet 2000; 8: 731-8.
  • Meiser B, Halliday JL. What is the impact of genetic counselling in women at increased risk of developing hereditary breast cancer? A meta-analytic review. Soc Sci Med 2002; 54: 1463-70.
  • DudokdeWit AC, Tibben A, Duivenvoorden HJ, Niermeijer MF, Passchier J, Trijsburg RW. Distress in individuals facing predictive DNA testing for autosomal dominant late-onset disorders: comparing questionnaire results with in-depth interviews. Rotterdam/Leiden Genetics Workgroup. Am J Med Genet 1998; 75: 62-74.
  • Tibben A, Roos RA, Niermeijer MF. Psychological consequences of presymptomatic testing for Huntington's disease. Lancet 1997; 349: 809.
  • Kash KM, Holland JC, Osborne MP, Miller DG. Psychological counseling strategies for women at risk of breast cancer. Monogr Natl Cancer Inst 1995; 17: 73-9.
  • Lerman C, DaIy M, Masny A, Balshem A. Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Gin Oncol 1994; 12: 843-50.
  • Hartmann LC, Sellers TA, Schaid DJ, et al. Efficacy of bilateral prophylactic mastectomy in BRCAl and BRCA2 gene mutation carriers. J Natl Cancer Inst 2001; 93: 1633-7.
  • Meijers-Heijboer H, van Geel B, van Putten WL, et al. Breast cancer after prophylactic bilateral mastectomy in women with a BRCAl or BRCA2 mutation. N Engl J Med 2001; 345: 15964.
  • Rebbeck TR, Lynch HT, Neuhausen SL, et al. Prophylactic oophorectomy in carriers of BRCAl or BRCA2 mutations. N Engl J Med 2002; 346: 1616-22.
  • Rebbeck TR, Levin AM, Eisen A, Snyder C, Watson P, Cannon-Albright L, et al. Breast cancer risk after bilateral prophylactic oophorectomy in BRCAl mutation carriers. J Natl Cancer Inst 1999; 91: 1475-9.
  • Kauff ND, Satagopan JM, Robson ME, et al. Risk-reducing salpingo-oophorectomy in women with a BRCAl or BRCA2 mutation. N Engl J Med 2002; 346: 1609-15.
  • Struewing JP, Watson P, Easton DF, Ponder BA, Lynch HT, Tucker MA. Prophylactic oophorectomy in inherited breast/ ovarian cancer families. Monogr Natl Cancer Inst 1995; 17: 33-5.
  • Piver MS, Jishi MF, Tsukada Y, Nava O. Primary peritoneal carcinoma after prophylactic oophorectomy in women with a family history of ovarian cancer. A report of the Gilda Radner Familial Ovarian Cancer Registry. Cancer 1993; 71: 2751-5.
  • Orann VR, Panageas KS, Whang W, Antman KH, Neugut AI. Decision analysis of prophylactic mastectomy and oophorectomy in BRCAl-positive or BRCA2-positive patients. J Clin Oncol 1998; 16: 979-85.
  • Schrag D, Kuntz KM, Garber JE, Weeks JC. Decision analysis-effects of prophylactic mastectomy and oophorectomy on life expectancy among women with BRCAl or BRCA2 mutations. N Engl J Med 1997; 336: 1465-71.
  • Eisinger F, Geller G, Burke W, Holtzman NA. Cultural basis for differences between US and French clinical recommendations for women at increased risk of breast and ovarian cancer. Lancet 1999; 353: 919-20.
  • Newman L. French national ad hoc committee strongly resists prophylactic mastectomy. J Natl Cancer Inst 2001; 93: 339.
  • Lerman C, Hughes C, Croyle RT, et al. Prophylactic surgery decisions and surveillance practices one year following BRCA1/ 2 testing. Prev Med 2000; 31: 75-80.
  • Lynch HT, Lynch JF, Rubinstein WS. Prophylactic mastectomy: obstacles and benefits. J Natl Cancer Inst 2001; 93:15867.
  • Hatcher MB, Fallowfield L, A'Hern R. The psychosocial impact of bilateral prophylactic mastectomy: prospective study using questionnaires and semistructured interviews. Br Med J 2001; 322: 76.
  • Stefanek ME, Helzlsouer KJ, Wilcox PM, Houn F. Predictors of and satisfaction with bilateral prophylactic mastectomy. Prev Med 1995; 24: 412-9.
  • Borgen PI, Hill AD, Tran KN, et al. Patient regrets after bilateral prophylactic mastectomy. Ann Surg Oncol 1998; 5: 603-6.
  • Hopwood P, Lee A, Shenton A, et al. Clinical follow-up after bilateral risk reducing ('prophylactic') mastectomy: mental health and body image outcomes. Psychooncology 2000; 9: 462-72.
  • Frost MH, Schaid DJ, Sellers TA, et al. Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. JAMA 2000; 284: 319-24.
  • Swisher EM, Babb S, Whelan A, Mutch DG, Rader JS. Prophylactic oophorectomy and ovarian cancer surveillance. Patient perceptions and satisfaction. J Reprod Med 2001; 46: 87-94.
  • Meiser B, Tiller K, Gleeson MA, Andrews L, Robertson G, Tucker KM. Psychological impact of prophylactic oophorectomy in women at increased risk for ovarian cancer. Psychooncology 2000; 9: 496-503.
  • Hallowell N. A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy. Psychooncology 2000; 9: 486-95.
  • Fry A, Busby-Earle C, Rush R, Cull A. Prophylactic oophorectomy versus screening: psychosocial outcomes in women at increased risk of ovarian cancer. Psychooncology 2001; 10: 231-41.
  • Hollenstein J, Bleiker EMA, Valdimarsdottir HB, van Beurden M, Aaronson NK. Prevention of hereditary ovarian cancer: choices and consequences. Psycho-oncology 2001; 10: S40.
  • Bassford TL, Hauck L. Human genome project and cancer: the ethical implications for clinical practice. Semin Oncol Nurs 1993; 9: 134-8.
  • Marteau TM, Anionwu W. Evaluating carrier testing: objectives and outcomes. In: Marteau T, Richards M, eds. The troubled helix. Social and psychological implications of the new human genetics. Cambridge: University Press, 1996: 123-39.
  • Billings PR, Kohn MA, de Cuevas M, Beckwith J, Alper JS, Natowicz MR. Discrimination as a consequence of genetic testing. Am J Hum Genet 1992; 50: 476-82.
  • Peterson EA, Milliron KJ, Lewis KE, Goold SD, Merajver SD. Health insurance and discrimination concerns and BRCA1/2 testing in a clinic population. Cancer Epidemiol Biomarkers Prev 2002; 11: 79-87.
  • van Maarle M, Stouthard M, van Loosdrecht S, Marang-van de Mheen P. Genetische screening en verzekeringen:dragers van FH ondervinden Problemen. Modisch contact 2000; 55: 360-2.
  • Lapham EV, Kozma C, Weiss JO. Genetic discrimination: perspectives of consumers. Science 1996; 274: 621-4.
  • Hopwood P, Keeling F, Long A, Pool C, Evans G, Howell A. Psychological support needs for women at high genetic risk of breast cancer: some preliminary indicators. Psychooncology 1998; 7: 402-12.
  • Kash KM, Holland JC, Halper MS, Miller DG. Psychological distress and surveillance behaviors of women with a family history of breast cancer. J Natl Cancer Inst 1992; 84: 24-30.
  • Cull A, Fry A, Rush R, Steel CM. Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic. Br J Cancer 2001; 84: 594-9.
  • Watson M, Lloyd S, Davidson J, et al. The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer. Br J Cancer 1999; 79: 868-74.
  • Bish A, Sutton S, Jacobs C, Levene S, Ramirez A, Hodgson S. Changes in psychological distress after cancer genetic counselling: a comparison of affected and unaffected women. Br J Cancer 2002; 86: 43-50.
  • Bleiker EM, Grosfeld FJ, Hahn DE, Honing C. Psychosocial care in family cancer clinics in The Netherlands: a brief report. Patient Educ Couns 2001; 43: 205-9.
  • Decruyenaere M, Evers-Kiebooms G, Denayer L, et al. Predictive testing for hereditary breast and ovarian cancer: a psychological framework for pre-test counselling. Eur J Hum Genet 2000; 8: 130-6.
  • DudokdeWit AC, Tibben A, Frets PG, et al. BRCA1 in the family: a case description of the psychological implications. Am J Med Genet 1997; 71: 63-71.
  • Tjemsland L, Soreide JA, Malt UF. Posttraumatic distress symptoms in operable breast cancer III: status one year after surgery. Breast Cancer Res Treat 1998; 47: 141-51.
  • Bleiker EMA, Pouwer F, van der Ploeg HM, Leer J-WH, Ader HJ. Psychological distress two years after diagnosis of breast cancer: frequency and prediction. Patient Educ Couns 2000; 40: 209-17.
  • Northouse LL, Templin T, Mood D, Oberst M. Couples' adjustment to breast cancer and benign breast disease: a longitudinal analysis. Psycho-oncology 1998; 7: 37-48.
  • DudokdeWit AC, Tibben A, Duivenvoorden HJ, Niermeijer MF, Passchier J. Predicting adaptation to presymptomatic DNA testing for late onset disorders: who will experience distress? Rotterdam Leiden Genetics Workgroup. J Med Genet 1998; 35: 745-54.
  • Wellisch DK, Gritz ER, Schain W, Wang HJ, Siau J. Psychological functioning of daughters of breast cancer patients. Part ii: characterizing the distressed daughter of the breast cancer patient. Psychosomatics 1992; 33: 171-9.
  • Hopwood P, Shenton A, Lalloo F, Evans DG, Howell A. Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer. J Med Genet 2001; 38: 139.
  • Erblich J, Bovbjerg DH, Valdimarsdottir HB. Looking forward and back: distress among women at familial risk for breast cancer. Ann Behav Med 2001; 22: 53-9.
  • Dudok-de Wit C, Meijers-Heijboer EJ, Tibben A, et al. Effect on a Dutch family of predictive DNA-testing for hereditary breast and ovarian cancer. Lancet 1994; 344: 197.
  • Lerman C, Hughes C, Lemon SJ, et al. What you don't know can hurt you: adverse psychologic effects in members of BRCAl-linked and BRCA2-linked families who decline genetic testing. J Clin Oncol 1998; 16: 1650-4.
  • Grosfeld FJ, Lips CJ, Ten Kroode HF, Beemer FA, Van Spijker HG, Brouwers-Smalbraak GJ. Psychosocial consequences of DNA analysis for men type 2. Oncology (Hunting!) 1996; 10: 141-6.
  • Davison C. Predicative genetics: the cultural implications of supplying probable futures. In: Marteau T, Richards M, eds. The troubled helix. Social and psychological implications of the new human genetics. Cambridge: University Press, 1996: 31730.
  • Wellisch DK. Families and cancer. Psycho-oncology 1998; 7: 1-2.
  • Northouse LL. Breast cancer in younger women: effects on interpersonal and family relations. Monogr Natl Cancer Inst 1994; 16: 183-90.
  • Northouse LL. The impact of cancer in women on the family. Cancer Pract 1995; 3: 134-42.
  • Horowitz M, Wilner N, Alvarez W. Impact of the Event Scale: a measure of subjective stress. Psychosom Med 1979; 41: 20918.
  • Spielberger CD. Manual for the state-trait anxiety inventory Stai-form Y. PaIo Alto, CA: Consulting Psychologists Press, 1983.
  • Radloff LS. A self-report depression scale for research in the general population. Appl Psychol Measure 1977; 1: 385401.
  • Marteau TM, Lerman C. Genetic risk and behavioural change. Br Med J 2001; 322: 1056-9.
  • Croyle RT, Lerman C. Risk communication in genetic testing for cancer susceptibility. J Natl Cancer Inst Monogr 1999; 25: 59-66.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Order Reprints Request Corporate Permissions

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

Request Academic Permissions

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.

Related research

People also read lists articles that other readers of this article have read.

Recommended articles lists articles that we recommend and is powered by our AI driven recommendation engine.

Cited by lists all citing articles based on Crossref citations.
Articles with the Crossref icon will open in a new tab.