Ethnic, racial and cultural identity and perceived benefits and barriers related to genetic testing for breast cancer among at-risk women of African descent in New York City

Public Health Genomics

Volumn 14, Issue 6, 2011, Pages 356-370

  Sussner, K M ^a   Edwards, T A ^a   Thompson, H S ^a,b   Jandorf, L ^a   Kwate, N O ^c   Forman, A ^d   Brown, K ^a   Kapil Pair, N ^a   Bovbjerg, D H ^e   Schwartz, M D ^f   Valdimarsdottir, H B ^a,g  

^a MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^b WAYNE STATE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c School of Public Health   (United States)

^d FOX CHASE CANCER CENTER   (United States)

^e UNIVERSITY OF PITTSBURGH CANCER INSTITUTE   (United States)

^f GEORGETOWN UNIVERSITY   (United States)

^g UNIVERSITY OF ICELAND   (Iceland)

Author keywords

Breast cancer; Cultural identity; Ethnic identity; Genetic testing; Racial identity

Indexed keywords

ADULT; AFRICAN AMERICAN; ARTICLE; BREAST CANCER; CANCER RISK; CENTRAL AMERICA; CONFIDENTIALITY; CONTROLLED STUDY; ETHNIC OR RACIAL ASPECTS; FEMALE; GENETIC COUNSELING; GENETIC RISK; GENETIC SCREENING; HUMAN; LONGITUDINAL STUDY; MAJOR CLINICAL STUDY; MULTIVARIATE ANALYSIS; NEGRO; OVARY CANCER; PARTICIPATORY RESEARCH; PRIORITY JOURNAL; UNITED STATES;

AFRICAN AMERICANS; ATTITUDE TO HEALTH; BREAST NEOPLASMS; CARIBBEAN REGION; CROSS-SECTIONAL STUDIES; CULTURAL CHARACTERISTICS; ETHNIC GROUPS; FEMALE; GENETIC COUNSELING; GENETIC TESTING; HUMANS; MULTIVARIATE ANALYSIS; NEW YORK CITY; OVARIAN NEOPLASMS; PERCEPTION; RISK;

EID: 80053386277     PISSN: 16624246     EISSN: 16628063     Source Type: Journal    
DOI: 10.1159/000325263     Document Type: Article

References (66)

1. Chen S, Parmigiani G: Meta-analysis of BRCA1 and BRCA2 penetrance. J Clin Oncol 2007; 25: 1329-1333. (Pubitemid 46706879)
2. Kinney AY, Croyle RT, Dudley WN, Bailey CN, Pelias MK, Neuhausen SL: Knowledge, attitudes and interest in breast-ovarian cancer gene testing: A survey of a large African- American kindred with a BRCA1 mutation. Prev Med 2001; 33: 543-551. (Pubitemid 34101877)
3. Hall MJ, Olopade OI: Confronting genetic testing disparities: Knowledge is power. JAMA 2005; 293: 1783-1785.
4. Hall MJ, Olopade OI: Disparities in genetic testing: Thinking outside the BRCA box. J Clin Oncol 2005; 24: 2197-2203.
5. Olopade OI: Genetics in clinical cancer care: A promise unfulfilled among minority populations. Cancer Epidemiol Biomarkers Prev 2004; 13: 1683-1686. (Pubitemid 39482942)
6. 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: 1729-1736.
7. Matthews AK, Cummings S, Thompson S, Wohl V, List M, Olopade OI: Genetic testing of African Americans for susceptibility to inherited cancers: Use of focus groups to determine factors contributing to participation. J Psychosoc Oncol 2000; 18: 1-19. (Pubitemid 30666496)
8. Lerman C, Hughes C, Benkendorf JL, Biesecker B, Kerner J, Willison J, Eads N, Hadley D, Lynch J: Racial differences in testing motivation and psychological distress following pretest education for BRCA1 gene testing. Cancer Epidemiol Biomarkers Prev 1999; 8: 361-367. (Pubitemid 29193891)
9. Simon MS, Korczak JF, Yee CL, Malone KE, Ursin G, Bernstein L, McDonald JA, Deapen D, Strom BL, Press MF, Marchbanks PA, Burkman RT, Weiss IK, Schwartz AG: Breast cancer risk estimates for relatives of white and African American women with breast cancer in the Women's Contraceptive and Reproductive Experiences Study. J Clin Oncol 2006; 24: 2498-2504. (Pubitemid 46630626)
10. Simon MS, Petrucelli N: Hereditary breast and ovarian cancer syndrome. The impact of race on uptake of genetic counseling and testing; in Verma M (ed): Methods in Molecular Biology, Cancer Epidemiology. New York, Springer, 2009, vol 471, pp 487-500.
11. Donovan KA, Tucker DC: Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample. J Behav Med 2000; 23: 15-36. (Pubitemid 30164133)
12. Peters N, Domchek SM, Rose A, Polis R, Stopfer J, Armstrong K: Knowledge, attitudes, and utilization of BRCA1/2 testing among women with early-onset breast cancer. Genet Test 2005; 9: 48-53. (Pubitemid 40586430)
13. Hughes C, Gomez-Caminero A, Benkendorf J, Kerner J, Isaacs C, Barter J, et al: Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Educ Couns 1997; 32: 51-62. (Pubitemid 27395979)
14. Thompson H, 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: 1579-1585. (Pubitemid 36020010)
15. 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: 217-227. (Pubitemid 37433821)
16. Bowman JE: Technical, genetic, and ethnical issues in screening and testing of African- Americans for hemochromatosis. Genet Test 2000; 4: 207-212. (Pubitemid 30618708)
17. Telfair J, Nash NB: African American culture; in Fisher NL (ed): Cultural and Ethnic Diversity: A Guide for Genetics Professionals. Baltimore, The Johns Hopkins University Press, 2000, pp 37-59.
18. Peters N, Rose A, Armstrong K: The association between race and attitudes about predictive genetic testing. Cancer Epidemiol Biomarkers Prev 2004; 13: 361-365. (Pubitemid 38737459)
19. Ford ME, Alford SH, Britton D, McClary B, Gordon HS: Factors influencing perceptions of breast cancer genetic counseling among women in an urban health care system. J Genet Couns 2007; 16: 735-753. (Pubitemid 350077233)
20. 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. (Pubitemid 44331550)
21. Baty BJ, Kinney AY, Ellis SM: Developing culturally sensitive cancer genetics communication aids for African Americans. Am J Med Genet A 2003; 118A:146-155. (Pubitemid 37063951)
22. Guidry JJ, Matthews-Juarez P, Copeland, VA: Barriers to breast cancer control for African- American women: The interdependence of culture and psychosocial issues. Cancer 2003; 97(suppl 1):318-323. (Pubitemid 36033853)
23. Kudadjie-Gyamfi E, Consedine NS, Magai C: On the importance of being ethnic: Coping with the threat of prostate cancer in relation to prostate cancer screening. Cultur Divers Ethnic Minor Psychol 2006; 12: 509-526. (Pubitemid 44258063)
24. Magai C, Consedine NS, Conway F, Neugut A, Culver C: Diversity matters: Unique populations of women and breast cancer screening. Cancer 2004; 100: 2300-2307. (Pubitemid 38657876)
25. Consedine NS, Magai C, Krivoshekova YS, Ryzewicz L, Neugut AI: Fear, anxiety, worry, and breast cancer screening behavior: A critical review. Cancer Epidemiol Biomarkers Prev 2004; 13: 501-510. (Pubitemid 38737883)
26. Sussner KM, Thompson HS, Valdimarsdottir H, Redd WH, Jandorf L: Acculturation and familiarity with attitudes toward and beliefs about genetic testing for cancer risk within Latinas in East Harlem, New York City. J Genet Couns 2009; 18: 60-71.
27. Edwards TA, Thompson HS, Kwate NO, Brown K, McGovern MM, Forman A, Kapil- Pair N, Jandorf L, Bovbjerg DH, Valdimarsdottir HB: Association between temporal orientation and attitudes about BRCA1/2 testing among women of African descent with family histories of breast cancer. Patient Educ Couns 2008; 72: 276-282.
28. Thompson HS, Valdimarsdottir HB, Winkel G, Jandorf L, Redd W: The Group-Based Medical Mistrust Scale: Psychometric properties and association with breast cancer screening. Prev Med 2004; 38: 209-218. (Pubitemid 38050292)
29. Hughes C, Fasaye GA, LaSalle VH, Finch C: Sociocultural influences on participation in genetic risk assessment and testing among African American women. Patient Educ Couns 2003; 51: 107-114. (Pubitemid 37311327)
30. Wang VO: Multicultural genetic counseling: Then, now and in the 21st century. Am J Med Genet 2001; 106: 208-215. (Pubitemid 32983388)
31. Betancourt H, Lopez S: The study of culture, ethnicity, and race in American Psychology; in Peplau LA, Taylor SE (eds): Sociocultural Perspectives in Social Psychology: Current Readings. Upper Saddle River, Prentice Hall, 1997.
32. Deshpande AD, Thompson VL, Vaughn KP, Kreuter MW: The use of sociocultural constructs in cancer screening research among African Americans. Cancer Control 2009; 16: 256-263.
33. Stryker S, Serpe RT: Identity salience and psychological centrality: Equivalent, overlapping or complementary concepts? Soc Psychol Quart 1994; 57: 16-36.
34. Sellers RM, Rowley SA, Chavous TM, Shelton JN, Smith MA: Multidimensional Inventory of Black Identity: A preliminary investigation of reliability and construct validity. J Pers Soc Psychol 1997; 73: 805-815.
35. Phinney JS: The Multigroup Ethnic Identity Measure: A new scale for use with diverse groups. J Adolescent Res 1992; 7: 156-176.
36. Cokley KO: Racial(ized) identity, ethnic identity, and Afrocentric values: Conceptual and methodological challenges in understanding African American identity. J Couns Psychol 2005; 52: 517-526. (Pubitemid 41587094)
37. Cornell S, Hartmann D: Ethnicity and Race: Making Identities in a Changing World. Thousand Oaks, Pine Forge Press, 2007.
38. Carter RT, Quereshi A: A typology of philosophical assumptions in multicultural counseling and training; in Ponterroto JG, Casas JM, Suzuki LA, Alexander CM (eds): Handbook of Multicultural Counseling. Thousand Oaks, Sage Publications, 1995, pp 239- 262.
39. Parham TA: Counseling Persons of African Descent: Raising the Bar of Practitioner Competence. Thousand Oaks, Sage Publications, 2002.
40. Grills C, Longshore D: Africentrism: Psychometric analyses of a self-report measure. J Black Psychol 1996; 22: 86-106. (Pubitemid 126023637)
41. New York City Department of City Planning Population Division: The Newest New Yorkers 2000, Immigrant New York in the New Millennium, NYC DCP #04-10. New York, NYC Dept of City Planning, 2004.
42. Parmigiani G, Berry DA, Aquilar O: Determining carrier probabilities for breast cancer susceptibility genes BRCA1 and BRCA2 Am J Hum Genet 1998; 62: 145-158. (Pubitemid 28093844)
43. Frank TS, Manley SA, Olopade OI, Cummings S, Garber JE, Bernhardt B, Antman K, Russo D, Wood ME, Mullineau L, Isaacs C, Peshkin B, Buys S, Venne V, Rowley PT, Loader S, Offit K, Robson M, Hampel H, Brener D, Winer EP, Clark S, Weber B, Strong LC, Thomas A, et al: Sequence analysis of BRCA1 and BRCA2 : Correlation of mutations with family history and ovarian cancer risk. J Clin Oncol 1998; 16: 2417-2425. (Pubitemid 28309036)
44. Couch FJ, DeShano ML, Blackwood MA, Calzone K, Stopfer J, Campeau L, Ganguly A, Rebbeck T, Weber BL: BRCA1 mutations in women attending clinics that evaluate the risk of breast cancer. N Engl J Med 1997; 336: 1409-1415. (Pubitemid 27208599)
45. Jacobsen PB, Valdimarsdottir HB, Brown KL, Offit K: Decision-making about genetic testing among women at familial risk for breast cancer. Psychosom Med 1997; 59: 459-466. (Pubitemid 27422242)
46. Hughes C, Lerman C, Lustbader E: Ethnic differences in risk perception among women at increased risk for breast cancer. Breast Cancer Res Treat 1996; 40: 25-35. (Pubitemid 26283488)
47. Lipkus IM, Iden D, Terrenoire J, Feaganes JR: Relationships among breast cancer concern, risk perceptions, and interest in genetic testing for breast cancer susceptibility among African American women with and without a family history of breast cancer. Cancer Epidemiol Biomarkers Prev 1999; 8: 533-539. (Pubitemid 29270338)
48. Halbert C, 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: 576-582. (Pubitemid 44402035)
49. Phinney JS: Ethnic identity in adolescents and adults: Review of research. Psychol Bull 1990; 108: 499-514.
50. Brook JS, Pahl K: The protective role of ethnic and racial identity and aspects of an Africentric orientation against drug use among African American young adults. J Genet Psychol 2005; 166: 329-345. (Pubitemid 41424810)
51. Helms JE: Black and White Racial Identity: Theory, Research and Practice. Westport, Greenwood Press, 1990.
52. Landrine H, Klonoff E: The African American acculturation scale: Origin and current status; in Jones RL (ed): Handbook of Tests and Measurements for Black Populations. Hampton, Cobb and Henry Publishers, 1996.
53. Bowen DJ, Christensen CL, Powers D, Graves DR, Anderson CA: Effects of counseling and ethnic identity on perceived risk and cancer worry in African American women. J Clin Psychol Med S 1998; 5: 365-379. (Pubitemid 128513887)
54. Scribner R, Hohn A, Dwyer J: Blood pressure and self-concept among African-American adolescents. J Natl Med Assoc 1995; 87: 417-422.
55. Bowen D, Hickman KM, Powers D: Importance of psychological variables in understanding risk perceptiosn and breast cancer screening of African American women. Womens Health 1997; 3: 227-242.
56. Parham TA, Helms JE: Attitudes of racial identity and self-esteem of Black students: An exploratory study. J Coll St Personnel 1985a;26: 143-147.
57. Cross WE Jr.: Shades of Black: Diversity in African-American Identity. Philadelphia, Temple University Press, 1991.
58. Parham TA, Helms JE: Relation of racial identity attitudes to self-actualization and affective states of Black students. J Couns Psychol 1985b;32: 431-440.
59. Rowley SJ, Sellers RM, Chavous TM, Smith MA: The relationship between racial identity and self-esteem in African American college and high school students. J Pers Soc Psychol 1998; 74: 715-724. (Pubitemid 128658100)
60. Taylor RD, Casten R, Flickinger SM, Roberts D, Fulmore CD: Explaining the school performance of African American adolescents. J Res Adolescence 1994; 4: 21-44.
61. Azibo D: Liberation Psychology. Trenton, African World Press, 1992.
62. Miller DB: Racial socialization and racial identity: Can they promote resiliency for African American adolescents? Adolescence 1999; 135: 493-501.
63. Rose AL, Peters N, Shea JA, Armstrong K: Attitudes and misconceptions about predictive genetic testing for cancer risk: A focus group study. Community Genet 2005; 8: 145-151. (Pubitemid 41197097)
64. Catz DS, Green NS, Tobin JN, Lloyd-Puryear MA, Kyler P, Umemoto A, Cernoch J, Browne R, Wolman F: Attitudes about genetics in underserved, culturally diverse populations. Community Genet 2005; 8: 161-172. (Pubitemid 41197099)
65. Nasim A, Belgrave FZ, Jagers RJ, Wilson KD, Owens K: The moderating effects of culture on peer deviance and alcohol use among high-risk African-American adolescents. J Drug Educ 2007; 37: 335-363. (Pubitemid 47535804)
66. Belgrave FZ, Van Oss Marin B, Chambers DB: Cultural, contextual and intrapersonal predictors of risky sexual attitudes among urban African American girls in early adolescence. Cultur Divers Ethnic Minor Psychol 2000; 6: 309-322.