Abstract
Hereditary cancer risk counseling is the process of identifying families at risk for hereditary cancer syndromes with the ultimate goal of minimizing cancer-related morbidity and mortality. We review psychological and behavioral outcomes of counseling and genetic testing for widely studied cancer syndromes, such as hereditary breast and ovarian cancer and hereditary colorectal cancer, as well as newer areas of inquiry, such as hereditary melanoma. We review both short- and longer-term psychological outcomes, including perceived costs and benefits. Our review suggests that rather than constituting a new stressor to which people must respond and adapt, hereditary cancer risk counseling and genetic testing may instead be conceptualized as powerful tools that patients and their families may use in ongoing efforts to manage hereditary cancer risk. Specifically, hereditary cancer risk counseling and genetic testing promote sustained improvements in adherence to screening recommendations, as well as other risk-reducing behaviors such as prophylactic surgery, but do not appear to create lasting increases in depression or anxiety. Further, there appear to be different patterns of psychological outcomes that are likely shaped both by specific personal and familial antecedents of the decision to seek genetic testing and properties of the cancer syndromes themselves. We present an integrative framework for understanding these diverse outcomes that may guide the design of future studies, and we discuss methodological issues that may inform our understanding of psychological and behavioral outcomes. Such understanding will help maximize the benefits of personalized medicine for cancer prevention through early detection and treatment.
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References
Scheuner MT, McNeel TS, Freedman AN. Population prevalence of familial cancer and common hereditary cancer syndromes. The 2005 California Health Survey Interview. Genet Med. 2010;12(11):726–35.
Croyle RT, Smith KR, Botkin JR, Baty B, Nash J. Psychological responses to BRCA1 mutation testing: preliminary findings. Health Psychol. 1997;16:63–72.
Gooding HC, Organista K, Burack J, Biesecker Bowles B. Genetic susceptibility testing from a stress coping perspective. Soc Sci Med. 2006;62:1880–90.
Aspinwall LG. Future-oriented thinking, proactive coping, and the management of potential threats to health and well-being. In: Folkman S, editor. The Oxford handbook of stress, health, and coping. New York: Oxford University Press; 2011. p. 334–65.
Trepanier A, Ahrens M, McKinnon W, Peters J, Stopfer J, Crumet Campbell S, Manley S, Culver JO, Acton R, Larsen-Haidle J, Correia LA, Bennett R, Pettersen B, Ferlita TD, Costalas JW, Hunt K, Donlon S, Skrzynia C, Farrell C, Callif-Daley F, Vockley CW. Genetic cancer risk assessment and counseling: recommendation of the National Society of Genetic Counselors. J Genet Couns. 2004;13: 83–114.
Robson ME, Storm CD, Weitzel J, et al. American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility. J Clin Oncol. 2003;21(12):2397–406.
Lindor NM, McMaster ML, Lindor CJ, Greene MH, et al. Concise handbook of familial cancer susceptibility syndromes-second edition. J Natl Cancer Inst Monogr. 2008;38:1–93.
Rebbeck TR, Kauff ND, Domcheck SM. Meta-analysis of risk reduction estimates associated with risk-reducing salpingo-oophorectomy in BRCA1 or BRCA2 mutation carriers. J Natl Cancer Inst. 2009;101(2):80–7.
Kauff ND, Domceh SM, Friebel TM, et al. Risk-reducing salpingo-oophorectomy for the prevention of BRCA1 and BRCA2 associated breast and gynecological cancer: a multicenter prospective study. J Clin Oncol. 2008;26(8):1331–7.
Kurian AW, Sigal BM, Plevritis SK. Survival analysis of cancer risk reduction strategies for BRCA1/2 mutation carriers. J Clin Oncol. 2009;28:222–31.
Heshka JT, Palleschi C, Howeley H, Wilson B. Wells PS. A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genet Med. 2008;10: 19–32.
Lerman C, Hughes C, Croyle RT, Main D, Durham C, Snyder C, Bonney A, Lynch JF, Narod SA, Lynch HT. Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing. Prev Med. 2000;31(1):75–80.
Watson M, Foster C, Eeles R, Eccles D, Ashley S, Davidson R, Mackay J, Morrison PJ, Hopwood P, Evans DG. Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort. Br J Cancer. 2004;91(10):1787–94.
Lynch HT, Snyder C, Lynch JF, Karatoprakli P, Trowonou A, Metcalfe K, Narod SA, Gong G. Patient responses to the disclosure of BRCA mutation tests in hereditary breast-ovarian cancer families. Cancer Genet Cytogenet. 2006;165:91–7.
Beery TA, Williams JK. Risk reduction and health promotion behaviors following genetic testing for adult-onset disorders. Genet Test. 2007;11:111–23.
Foster C, Watson M, Eeles R, et al. Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up. Br J Cancer. 2007;96:718–24.
Schwartz MD, Isaacs C, Graves KD, Poggi E, Peshkin BN, Gell C, Finch C, Kelly S, Taylor KL, Perley L. Long-term outcomes of BRCA1/BRCA2 testing: risk reduction and surveillance. Cancer. 2012;118(2):510–7.
Jasperson KW, Tuohy TM, Neklason DW, Burt RW. Hereditary and familial colon cancer. Gastro-enterology. 2010;138(6):2044–58.
Jarvinen HJ, Renkonen-Sinisalo L, Aktan-Colln K, et al. Ten years after mutation testing for Lynch syndrome: cancer incidence and outcome in mutation positive and mutation negative family members. J Clin Oncol. 2009;27(28):4793–7.
Kohlmann W, Gruber SB. Lynch syndrome. In: Pagon RA, Rirk TD, Dolan CR, Stephens K, editors. GeneReviews. Seattle: University of Washington; 2011. Seattle; 1993–2004.
Stoffel EM, Mercado RC, Kohlmann W, Ford B, et al. Prevalence and predictors of appropriate colorectal cancer surveillance in Lynch syndrome. Am J Gastroenterol. 2010;105(8):1851–60.
Hughes Halbert C, Lynch H, Lynch J, Main D, Kucharski S, Rustgi AK, Lerman C. Colon cancer screening practices following genetic testing for hereditary nonpolyposis colon cancer (HNPCC) mutations. Arch Intern Med. 2004;164:1881–7.
Douma KFL, Aaronson NK, Vasen HFA, Bleiker EMA. Psychosocial issues in genetic testing for familial adenomatous polyposis: a review of the literature. Psychooncology. 2008;17:737–45.
Levine FR, Coxworth JE, Stevenson DA, Tuohy T, Burt RW, Kinney AY. Parental attitudes, beliefs, and perceptions about genetic testing for FAP and colorectal cancer surveillance in minors. J Genet Couns. 2010;19(3):269–79.
Kinney AY, Hicken B, Simonsen SE, Venne V, Lowstuter K, et al. Colorectal cancer surveillance behaviors among members of typical and attenuated FAP families. Am J Gastroenterol. 2007;102(1): 153–62.
Michie S, Weinman J, Miller J, Collins V, Halliday J, Marteau TM. Predictive genetic testing: high risk expectations in the face of low risk information. J Behav Med. 2002;25:33–50.
Leachman SA, Carucci J, Kohlmann W, et al. Selection criteria for genetic assessment of patients with familial melanoma. J Am Acad Dermatol. 2009;61:677.e1–e14.
Bishop D, Demenais F, Goldstein A, Bergman W, Bishop J, Bressac-de Paillerets B, et al. Geographical variation in the penetrance of CDKN2A mutations for melanoma. J Natl Cancer Inst. 2002;94:894–903.
Aspinwall LG, Leaf SL, Kohlmann W, Dola ER, Leachman SA. Patterns of photoprotection following CDKN2A/p16 genetic test reporting and counseling. J Am Acad Dermatol. 2009;60:745–57.
Bergenmar M, Brandberg Y. Sunbathing and sun-protection behaviors and attitudes of young Swedish adults with hereditary risk for malignant melanoma. Cancer Nurs. 2001;24:341–50.
Brandberg Y, Jonell R, Broberg M, Sjoden P-O, Rosdahl I. Sun-related behaviour in individuals with dysplastic naevus syndrome. Acta Derm Venereol (Stockh). 1996;76:381–4.
Aspinwall LG, Taber JM, Leachman SA. Genetic testing and the proactive management of familial cancer risk. In: Directions in stress and coping research in chronic illness. Society for Behavioral Medicine, Seattle; April, 2010. Abstract available in Ann Behav Med, 39 (Suppl), s126.
Aspinwall LG, Leaf SL, Dola ER, Kohlmann W, Leachman SA. CDKN2A/p16 genetic test reporting improves early detection intentions and practices in high-risk melanoma families. Cancer Epidemiol Biomarkers Prev. 2008;17:1510–9.
Kasparian N, Meiser B, Butow P, Simpson J, Mann G. Genetic testing for melanoma risk: a prospective cohort study of uptake and outcomes among Australian families. Genet Med. 2009;11:265–78.
Vasen HF, Gruis NA, Frants RR, van Der Velden PA, Hille ET, Bergman W. Risk of developing pancreatic cancer in families with familial atypical multiple mole melanoma associated with a specific 19 deletion of p16 (p16-Leiden). Int J Cancer. 2000;87: 809–11.
de Snoo F, Riedijk S, Tibben A, et al. Genetic testing in familial melanoma: uptake and implications. Psychooncology. 2008;17:790–6.
Aspinwall LG, Taber JM, Leaf SL, Kohlmann W, Leachman SA. Genetic testing for hereditary melanoma and pancreatic cancer: a longitudinal study of psychological outcome. Psycho-oncology. 2011. doi: 10.1002/pon.2080
Horowitz MJ, Field NP, Zanko A, Donnelly EF, Epstein C, Longo F. Psychological impact of news of genetic risk for Huntington disease. Am J Med Genet. 2001;103:188–92.
Lerman C, Croyle RT, Tercyak KP, Hamann HA. Genetic testing: psychological aspects and implications. J Consult Clin Psychol. 2002;70:784–97.
Marteau TM, Croyle RT. The new genetics: psychological responses to genetic testing. BMJ. 1998;316:693–6.
Broadstock M, Michie S, Marteau T. Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet. 2000;8:731–8.
Collins VR, Meiser B, Ukomunne OC, Gaff C, St John DJ, Halliday JL. The impact of predictive genetic testing for hereditary nonpolyposis colorectal cancer: three years after testing. Genet Med. 2007;9:290–7.
Hamilton JG, Lobel M, Moyer A. Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review. Health Psychol. 2009;28:510–8.
Michie S, Bobrow M, Marteau T. Predictive genetic testing in children and adults: a study of emotional impact. J Med Genet. 2001;38:519–26.
Beran TM, Stanton AL, Kwan L, Seldon J, Bower JE, Vodermaier A, Ganz PA. The trajectory of psychological impact in BRCA1/2 genetic testing: does time heal? Ann Behav Med. 2008;36:107–16.
Meiser B, Collins V, Warren R, Gaff C, St John DJB, Young M-A, Harrop K, Brown J, Halliday J. Psychological impact of genetic testing for hereditary non-polyposis colorectal cancer. Clin Genet. 2004;66:502–11.
Van Roosmalen MS, Stalmeier PFM, Verhoef LCG, Hoekstra-Weebers JEHM, Oosterwjik JC, Hoogerbrogge N, Moog U, van Daal WAJ. Impact of BRCA1/2 testing and disclosure of a positive result on women affected and unaffected with breast or ovarian cancer. Am J Med Genet A. 2004;124A:346–55.
Gritz ER, Peterson SK, Vernon SW, Marani SK, Baile WF, Watts BG, Amos CI, Frazier ML, Lynch PM. Psychological impact of genetic testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol. 2005;23:1902–10.
Lodder L, Frets PG, Trijsburg RW, Meijers-Hiejboer J, Klijn JGM, Diuvenvoorden HJ, Tibben A, Wagner A, van der Meer CA, van den Ouweland AMW, Niermeijer MF. Psychological impact of receiving a BRCA1/BRCA2 test result. Am J Med Genet. 2001;98:15–24.
Smith AW, Dougall AL, Posluszny DM, Somers TJ, Rubinstein WS, Baum A. Psychological distress and quality of life associated with genetic testing for breast cancer risk. Psychooncology. 2008;17:767–73.
Ho SMY, Ho JWC, Bonanno GA, Chu ATW, Chan EMS. Hopefulness predicts resilience after hereditary colorectal cancer genetic testing: a prospective outcome trajectories study. BMC Cancer. 2010;10:279.
Bonanno GA, Wortman CB, Lehman DR, Tweed RG, Haring M, Sonnega J, Carr D, Nesse RM. Resilience to loss and chronic grief: a prospective study from preloss to 18-months postloss. J Pers Soc Psychol. 2002;83(5):1150–64.
Hadley DW, Ashida S, Jenkins JF, Calzone KA, Kirsch IR, Koehlya LM. Colonoscopy use following mutation detection in Lynch syndrome: exploring a role for cancer screening in adaptation. Clin Genet. 2011;79:321–8.
O’Neill SC, Rini C, Goldsmith RE, Valdimarsdottir H, Cohen LH. Distress among women receiving uninformative BRCA1/2 results: 12-month outcomes. Psychooncology. 2009;18:1088–96.
Vos J, Otten W, van Asperen C, Jansen A, Menko F, Tibben A. The counsellees’ view of an unclassified variant in BRCA1/2: recall, interpretation, and impact on life. Psychooncology. 2008;17:822–30.
Cella D, Hughes C, Peterman A, Chang C-H, Keshkin BN, Schwartz MD, Wenzel L, Lemke A, Marcus A, Lerman C. A brief assessment of concerns associated with genetic testing for cancer: the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire. Health Psychol. 2002;21: 564–72.
Hooker GW, Leventhal K-G, DeMarco T, Peshkin BN, Finch C, Wahl E, Rispoli Joines J, Brown K, Valdimarsdottir H, Schwartz MD. Longitudinal changes in patient distress following interactive decision aid use among BRCA1/2 carriers: a randomized trial. Med Decis Making. 2011;31(3):412–21.
Esplen MJ, Stuckless N, Hunter J, Liede A, Metcalfe K, Glendon G, Narod S, Kutler K, Scott J, Irwin E. The BRCA Self-Concept Scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers. Psychooncology. 2009;18:1216–29.
Lim J, Macluran M, Price M, Bennett B, Butow P, kConFab Psychosocial Group. Short- and long-term impact of receiving genetic mutation results in women at increased risk for hereditary breast cancer. J Genet Couns. 2004;13(2):115–33.
Claes E, Evers-Kiebooms G, Denayer L, Decruyenaere M, Boogaerets A, Philippe K, Legius E. Predictive genetic testing for hereditary breast and ovarian cancer: psychological distress and illness representations 1 year following disclosure. J Genet Couns. 2005;14(5):349–63.
Claes E, Denayer L, Evers-Kiebooms G, Boogaerts A, Philippe K, Tejpar S, Devriendt K, Legius E. Predictive testing for hereditary nonpolyposis colorectal cancer: subjective perception regarding colorectal and endometrial cancer, distress, and health-related behavior at one year post-test. Genet Test. 2005;9:54–65.
Taber JM, Aspinwall LG, Kohlmann W, Dow R, Leachman SA. Parental preferences for CDKN2A/p16 testing of minors. Genet Med. 2010;12(12): 823–38.
Read CY, Perry DJ, Duffy ME. Design and psychometric evaluation of the psychological adaptation to Genetic Information Scale. J Nurs Scholarsh. 2005;37(3):203–8.
Berkenstadt M, Shiloh S, Barkai G, Katznelson MB, Goldman B. Perceived personal control (PPC): a new concept in measuring outcome of genetic counseling. Am J Med Genet. 1999;82(1):53–9.
Smets EM, Pieterse AH, Aalfs CM, Ausems MG, van Dulmen AM. The perceived personal control (PPC) questionnaire as an outcome of genetic counseling: reliability and validity of the instrument. Am J Med Genet A. 2006;140(8):843–50.
Esplen MJ, Stuckless N, Berk T, Butler K, Gallinger S. The FAP self-concept scale (adult form). Fam Cancer. 2009;8(1):39–50.
Petersen HV, Domanska K, Bendahl P-O, Wong J, Carlsson C, Bernstein I, Esplen MJ, Nilbert M. Validation of a self-concept scale for Lynch Syndrome in different nationalities. J Genet Counsel. 2011;20:308–13.
Kelly K, Leventhal H, Andrykowski M, Toppmeyer D, Much J, Dermody J, Marvin M, Baran J, Schwalb M. Using the common sense model to understand perceived cancer risk in individuals testing for BRCA1/2 mutations. Psychooncology. 2005;14:34–48.
Helgeson VS. Survivor centrality among breast cancer survivors: implications for well-being. Psychooncology. 2011;20:517–24.
Wiebe DJ, Berg CA, Palmer DL, Korbel C, Beveridge RM. Illness and the self: examining adjustment among adolescents with diabetes. Paper presented: Society of Behavioral Medicine, Washington, DC; 2002.
Low CA, Bower JE, Kwan L, Seldon J. Benefit finding in response to BRCA1/2 testing. Ann Behav Med. 2008;35:61–9.
Tedeschi RG, Calhoun LG. The posttraumatic growth inventory: measuring the positive legacy of trauma. J Trauma Stress. 1996;9:455–71.
Hamilton R, Williams JK, Bowers BJ, Calzone K. Life trajectories, genetic testing, and risk reduction decisions in 18–29 year old women at risk for hereditary breast and ovarian cancer. J Genet Counsel. 2009;18:147–59.
Shiloh S, Koehly L, Jenkins J, Martin J, Hadley D. Monitoring coping style moderates emotional reactions to genetic testing for hereditary nonpolyposis colorectal cancer: a longitudinal study. Psychooncology. 2008;17:746–55.
Leaf SL, Aspinwall LG, Leachman SA. God and agency in the era of molecular medicine: religious beliefs predict sun-protection behaviors following melanoma genetic test reporting. Arch Psychol Relig. 2010;32:87–112.
Aspinwall LG, Leaf SL, Leachman SA. Meaning and agency in the context of genetic testing for familial cancer. In: Wong PTP, editor. The human quest for meaning: Theories, research, and applications. 2nd ed. New York: Routledge; 2012; 457–94.
Kinney AY, Coxworth JE, Simonson SE, Fanning JB. Religiosity, spirituality, and psychological distress in African-Americans at risk for having a hereditary cancer predisposing gene mutation. Am J Med Genet C Semin Med Genet. 2009;151C:13–21.
Schwartz MD, Hughes C, Roth J, Main D, Peshkin BN, Isaacs C, et al. Spiritual faith and genetic testing decisions among high-risk breast cancer probands. Cancer Epidemiol Biomarkers Prev. 2000;9(4):381–5.
Aspinwall LG, Tedeschi RG. The value of Positive Psychology for Health Psychology: progress and pitfalls in examining the relation of positive phenomena to health. Ann Behav Med. 2010;39:4–15.
Aspinwall LG, Tedeschi RG. Of babies and bathwater: a reply to Coyne and Tennen’s views on positive psychology and health. Ann Behav Med. 2010;39:27–34.
van Oostrom I, Meijers-Heijboer H, Lodder LN, Duivenvoorden HJ, van Gool AR, Seynaeve C, van der Meer CA, Klijn JGM, van Geel BN, Burger CW, Wladimiroff JW, Tibben A. Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. J Clin Oncol. 2003;21(20):3867–74.
Tercyak KP, Peshkin BN, Brogan BM, DeMarco T, Pennanen MF, Willey SC, Magnant CM, Rogers S, Isaacs C, Schwartz MC. Quality of life after contralateral prophylactic mastectomy in newly diagnosed high-risk breast cancer patients who underwent BRCA1/2 gene testing. J Clin Oncol. 2007;25:285–91.
Hay J, Ostroff J, Martin A, Serle N, Soma S, Mujumdar U, Berwick M. Skin cancer risk discussions in melanoma-affected families. J Cancer Educ. 2005;20:240–6.
Hay J, Shuk E, Zapolska J, Ostroff J, Lischewski J, Brady MS, Berwick M. Family communication patterns after melanoma diagnosis. J Fam Commun. 2009;9:209–32.
Kinney AY, Simonsen SE, Baty BJ, et al. Risk reduction and provider communication following genetic counseling and BRCA1 mutation testing in an African-American kindred. J Genet Couns. 2006;15(4):293–305.
Gaff CL, Clarke AJ, Atkinson P, Sivell S, Elwyn G, Iredale R, Thornton H, Dundon J, Shaw C, Edwards A. Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet. 2007;15:999–1011.
Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Kohlmann WK, Gritz ER. How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genet C Semin Med Genet. 2003;119C(1):78–86 [Special Issue: Genetic Testing and the Family].
Hamann HA, Smith TW, Smith KR, Croyle RT, Ruiz JM, Kircher JC, Botkin JR. Interpersonal responses among sibling dyads testing for BRCA1/BRCA2 gene mutations. Health Psychol. 2008;27(1):100–9.
Peters JA, Vadaparampil ST, Kramer J, Moser RP, Court LJ, Loud J, Greene MH. Familial testicular cancer: interest in genetic testing among high-risk family members. Genet Med. 2006;8(12):760–70.
Peters JA. Unpacking the blockers: understanding perceptions and social constraints of health communication in hereditary breast ovarian cancer (HBOC) susceptibility families. J Genet Couns. 2011;20(5):450–64.
Wylie JE, Smith KR, Botkin JR. Effects of spouses on distress experienced by BRCA1 mutation carriers over time. Am J Med Genet C Semin Med Genet. 2003;119C(1):35–44.
Kinney AY, Bloor LE, Mandal D, Simonsen SE, Baty BJ, Holubkov R, Seggar K, Neuhausen S, Smith K. The impact of receiving genetic test results on general and cancer-specific psychologic distress among members of an African-American kindred with a BRCA1 mutation. Cancer. 2005;104(11):2508–16.
Marteau TM, French DP, Griffin SJ, Prevost AT, Sutton S, Watkinson C, Attwood S, Hollands GJ. Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours. Cochrane Database Syst Rev. 2010;(10):CD007275.
Armstrong K, Micco E, Carney A, Stopfer J, Putt M. Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. JAMA. 2005;293:1729–36.
Armstrong K, Calzone K, Stopfer J, Fitzgerald G, Coyne J, Weber B. Factors associated with decisions about clinical BRCA1/2 testing. Cancer Epidemiol Biomarkers Prev. 2000;9:1251–4.
Thompson HS, Valdimarsdottir HB, Duteau-buck C, Guevarra J, Bovbjerg DH, Richmond-Avellaneda C, Amarel D, Godfrey D, Brown K, Offit K. Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiol Biomarkers Prev. 2002;11:1579–85.
Halbert CH, Kessler L, Stopfer JE, Domchek S, Wileyto EP. Low rates of acceptance of BRCA1 and BRCA2 test results among African American women at increased risk for hereditary breast-ovarian cancer. Genet Med. 2006;8(9):576–82.
Riedijk SR, de Snoo RA, van Dijk S, Bergman W, van Haeringen A, Silberg S, van Elderen TM, Tibben A. Hereditary melanoma and predictive genetic testing: why not? Psychooncology. 2005;14(9):738–45.
American Cancer Society. Cancer facts & figures 2008. Atlanta: American Cancer Society; 2008. http://www.cancer.org/acs/groups/content/@nho/documents/document/2008cafffinalsecuredpdf.pdf
Hall MJ, Olopade OI. Disparities in genetic testing: thinking outside the BRCA box. J Clin Oncol. 2006;24(14):2197–203.
Peters N, Rose A, Armstrong K. The association between race and attitudes about predictive genetic testing. Cancer Epidemiol Biomarkers Prev. 2004; 13(3):361–5.
Pagan JA, Su D, Li L, Armstrong K, Asch DA. Racial and ethnic disparities in awareness of genetic testing for cancer risk. Am J Prev Med. 2009;37(6): 524–30.
Armstrong K, Weber B, Ubel PA, Guerra C, Schwartz JS. Interest in BRCA1/2 testing in a primary care population. Prev Med. 2002;34(6):590–5.
Thompson HS, Valdimarsdottir HB, Jandorf L, Redd W. Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women. Patient Educ Couns. 2003;51:217–27.
Harris Y, Gorelick PH, Samuels P, Bempong I, et al. Why African Americans may not be participating in clinical trials. J Natl Med Assoc. 1996;88(1):630–4.
Whetten K, Reif S, Whetten R, Murphy-McMillan LK. Trauma, mental health, distrust, and stigma among HIV-positive persons: implications for effective care. Psychosom Med. 2008;70:531–8.
Halbert CH, Weathers B, Delmoor E, Mahler B, Coyne J, Thompson HS, Have TT, Vaughn D, Malkowicz S, Bruce LD. Racial differences in medical mistrust among men diagnosed with prostate cancer. Cancer. 2009;115(11):2553–61.
Halbert CH, Armstrong K, Gandy Jr OH, Shaker L. Racial differences in trust in health care providers. Arch Intern Med. 2006;166:896–901.
Hammond WP, Matthews D, Mohottig D, Agyemang A, Corbie-Smith G. Masculinity, medical mistrust, and preventive health services delays among community-dwelling African-American men. J Gen Intern Med. 2010;25(12):1300–8.
Gonzalez JS, Penedo FJ, Llabre MM, Duran RE, Antoni MH, Schneiderman N, Horne R. Physical symptoms, beliefs about medications, negative mood, and long-term HIV medication adherence. Ann Behav Med. 2007;34(1):46–55.
Purnell JQ, Katz ML, Andersen BL, Palesh O, Figueroa-Moseley C, Jean-Pierre P, Bennett N. Social and cultural factors are related to perceived colorectal cancer screening benefits and intentions in African Americans. J Behav Med. 2010;33:24–34.
Dovidio JF, Penner LA, Albrecht TL, Norton WE, Gaertner SL, Shelton JN. Disparities and distrust: the implications of psychological processes for understanding racial disparities in health and health care. Soc Sci Med. 2008;67(3):478–86.
Sussner KM, Thompson HS, Valdimarsdottir HB, Redd WH, Jandorf L. Acculturation and familiarity with, attitudes towards and beliefs about genetic testing for cancer risk within Latinas in East Harlem, New York City. J Genet Counsel. 2009;18:60–71.
Hughes C, Gomez-Caminero A, Benkendorf J, Kerner J, Isaacs C, Barter J, Lerman C. Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Educ Couns. 1997;32:51–62.
Charles S, Kessler L, Stopfer JE, Domchek S, Halbert CH. Satisfaction with genetic counseling for BRCA1 and BRCA2 mutations among African American women. Patient Educ Couns. 2006;63:196–204.
Shields AE, Burke W, Levy DE. Differential use of available genetic tests among primary care physicians in the United States: results of a national survey. Genet Med. 2008;10(6):404–14.
Villani A, Tabori U, Schiffman J, et al. Biochemical and imaging surveillance in germline TP53 mutation carriers with Li-Fraumeni syndrome: a prospective observational study. Lancet Oncol. 2011;12(6): 559–67.
Patenaude AF, Schneider KA, Kieffer SA, et al. Acceptance of invitations for p53 and BRCA1 predisposition testing: factors influencing potential utilization of cancer genetic testing. Psychooncology. 1996;5:241–50.
Peterson SK, Pentz RD, Blanco AM, et al. Evaluation of a decision aid for families considering p53 genetic counseling and testing. Genet Med. 2006;8(4):226–33.
Lammens CRM, Aaronson NK, Wagner A, et al. Genetic testing in Li-Fraumeni syndrome: uptake and psychosocial consequences. J Clin Oncol. 2010;28(18):3008–14.
Peterson SK, Pentz RD, Marani S, et al. Psychological functioning in persons considering genetic counseling and testing for Li-Fraumeni syndrome. Psychooncology. 2008;17:783–9.
Lammens CRM, Bleiker EMA, Verhoef S, et al. Psychosocial impact of von Hippel-Lindau disease: levels and sources of distress. Clin Genet. 2010;77:483–92.
Acknowledgments
The authors were supported in part in the preparation of this chapter by Award Number R01CA158322 from the National Cancer Institute. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health. The authors acknowledge the use of core facilities supported by The National Institutes of Health 5P30CA420-14 awarded to Huntsman Cancer Institute from National Cancer Institute (NCI) Cancer Center Support Grants, the genetic counseling core facility supported by the Huntsman Cancer Foundation, and The National Institutes of Health Office of the Director 1KL2RR025763-01 National Center for Research Resources awarded to the University of Utah. We thank Marjan Champine and Tammy Stump for helpful comments on an earlier version of this manuscript and Angela Newman for assistance with its preparation.
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Aspinwall, L.G., Taber, J.M., Kohlmann, W., Leachman, S.A. (2013). Psychological Aspects of Hereditary Cancer Risk Counseling and Genetic Testing. In: Carr, B., STEEL, J. (eds) Psychological Aspects of Cancer. Springer, Boston, MA. https://doi.org/10.1007/978-1-4614-4866-2_3
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