Bridging the communication divide: A role for health psychology in the genomic era

Professional Psychology: Research and Practice

Volumn 43, Issue 6, 2012, Pages 568-575

  Tercyak, Kenneth P ^a   O'Neill, Suzanne C ^a   Roter, Debra L ^b   McBride, Colleen M ^c  

^a GEORGETOWN UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

^c NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

Author keywords

Behavior; Communication; Genetics; Genomics; Health

Indexed keywords

EID: 84874568038     PISSN: 07357028     EISSN: None     Source Type: Journal    
DOI: 10.1037/a0028971     Document Type: Article

References (75)

1. Acosta, M. T., Castellanos, F. X., Bolton, K. L., Balog, J. Z., Eagen, P., Nee, L.,...Muenke, M. (2008). Latent class subtyping of attentiondeficit/hyperactivity disorder and comorbid conditions. Journal of the American Academy of Child & Adolescent Psychiatry, 47, 797-807. doi:10.1097/CHI.0b013e318173f70b
2. Addington, A. M., & Rapoport, J. L. (2012). Annual research review: Impact of advances in genetics in understanding developmental psychopathology. Journal of Child Psychology and Psychiatry, 53, 510-518. doi:10.1111/j.1469-7610.2011.02478.x
3. American College of Medicine Genetics Board of Directors. (2004). ACMG statement on direct-to-consumer genetic testing. Genetics in Medicine, 6, 60. doi:10.1097/01.GIM.0000106164.59722.CE
4. Baum, A., Friedman, A. L., & Zakowski, S. G. (1997). Stress and genetic testing for disease risk. Health Psychology, 16, 8-19. doi:10.1037/02786133.16.1.8
5. Baumann, S. L. (2006). Family systems genetic illness model-breast cancer. Clinical Journal of Oncology Nursing, 10, 377-381. doi: 10.1188/06.CJON.377-381
6. Benkendorf, J. L., Prince, M. B., Rose, M. A., De Fina, A., & Hamilton, H. E. (2001). Does indirect speech promote nondirective genetic counseling? Results of a sociolinguistic investigation. American Journal of Medical Genetics, 106, 199-207. doi:10.1002/ajmg.10012
7. Biesecker, L. G. (2010). Exome sequencing makes medical genomics a reality. Nature Genetics, 42, 13-14. doi:10.1038/ng0110-13
8. Bloss, C. S., Schork, N. J., & Topol, E. J. (2011). Effect of direct-toconsumer genomewide profiling to assess disease risk. The New England Journal of Medicine, 364, 524-534. doi:10.1056/NEJMoa1011893
9. Boon, H., & Stewart, M. (1998). Patient-physician communication assessment instruments: 1986 to 1996 in review. Patient Education and Counseling, 35, 161-176. doi:10.1016/S0738-3991(98)00063-9
10. Borry, P., Cornel, M. C., & Howard, H. C. (2010). Where are you going, where have you been: A recent history of the direct-to-consumer genetic testing market. Journal of Community Genetics, 1, 101-106. doi: 10.1007/s12687-010-0023-z
11. Botkin, J. R., Croyle, R. T., Smith, K. R., Baty, B. J., Lerman, C., Goldgar, D. E.,...Nash, J. E. (1996). A model protocol for evaluating the behavioral and psychosocial effects of BRCA1 testing. Journal of the National Cancer Institute, 88, 872-882. doi:10.1093/jnci/88.13.872
12. Braithwaite, D., Emery, J., Walter, F., Prevost, A. T., & Sutton, S. (2006). Psychological impact of genetic counseling for familial cancer: A systematic review and meta-analysis. Familial Cancer, 5, 61-75. doi: 10.1007/s10689-005-2577-1
13. Bryan, A., Hutchison, K. E., Seals, D. R., & Allen, D. L. (2007). A transdisciplinary model integrating genetic, physiological, and psychological correlates of voluntary exercise. Health Psychology, 26, 30-39. doi:10.1037/0278-6133.26.1.30
14. Cameron, L. D., & Leventhal, H. (Eds.) (2003). The self-regulation of health and illness behavior. London, UK: Routledge.
15. Caulfield, T., Ries, N. M., Ray, P. N., Shuman, C., & Wilson, B. (2010). Direct-to-consumer genetic testing: Good, bad or benign? Clinical Genetics, 77, 101-105. doi:10.1111/j.1399-0004.2009.01291.x
16. Croyle, R. T., & Lerman, C. (1999). Risk communication in genetic testing for cancer susceptibility. Journal of the National Cancer Institute. Monographs, 59-66. doi:10.1093/oxfordjournals.jncimonographs .a024210
17. Ellington, L., Baty, B. J., McDonald, J., Venne, V., Musters, A., Roter, D.,...Croyle, R. T. (2006). Exploring genetic counseling communication patterns: The role of teaching and counseling approaches. Journal of Genetic Counseling, 15, 179-189. doi:10.1007/s10897-005-9011-6
18. Ellington, L., Kelly, K. M., Reblin, M., Latimer, S., & Roter, D. (2011). Communication in genetic counseling: Cognitive and emotional processing. Health Communication, 26, 667-675. doi:10.1080/10410236 .2011.561921
19. Ellington, L., Maxwel, A., Baty, B. J., Roter, D., Dudley, W. N., & Kinney, A. Y. (2007). Genetic counseling communication with an African American BRCA1 kindred. Social Science & Medicine, 64, 724-734. doi: 10.1016/j.socscimed.2006.09.017
20. Eveleigh, R. M., Muskens, E., van Ravesteijn, H., van Dijk, I., van Rijswijk, E., & Lucassen, P. (2012). An overview of 19 instruments assessing the doctor-patient relationship: Different models or concepts are used. Journal of Clinical Epidemiology, 65, 10-15. doi:10.1016/ j.jclinepi.2011.05.011
21. Feero, W. G., Guttmacher, A. E., & Collins, F. S. (2010). Genomic medicine-an updated primer. The New England Journal of Medicine, 362, 2001-2011. doi:10.1056/NEJMra0907175
22. Folkman, S., & Lazarus, R. S. (1988). The relationship between coping and emotion: Implications for theory and research. Social Science & Medicine, 26, 309-317. doi:10.1016/0277-9536(88)90395-4
23. Gaff, C. L., Clarke, A. J., Atkinson, P., Sivell, S., Elwyn, G., Iredale, R.,...Edwards, A. (2007). Process and outcome in communication of genetic information within families: A systematic review. European Journal of Human Genetics, 15, 999-1011. doi:10.1038/sj.ejhg.5201883
24. Halbert, C. H., Kessler, L., Troxel, A. B., Stopfer, J. E., & Domchek, S. (2010). Effect of genetic counseling and testing for BRCA1 and BRCA2 mutations in African American women: A randomized trial. Public Health Genomics, 13, 440-448. doi:10.1159/000293990
25. Halbert, C. H., Stopfer, J. E., McDonald, J., Weathers, B., Collier, A., Troxel, A. B., & Domchek, S. (2011). Long-term reactions to genetic testing for BRCA1 and BRCA2 mutations: Does time heal women's concerns? Journal of Clinical Oncology, 29, 4302-4306. doi:10.1200/ JCO.2010.33.1561
26. Han, P. K., Klein, W. M., Lehman, T., Killam, B., Massett, H., & Freedman, A. N. (2011). Communication of uncertainty regarding individualized cancer risk estimates: Effects and influential factors. Medical Decision Making, 31, 354-366. doi:10.1177/0272989X10371830
27. Haskard Zolnierek, K. B., & Dimatteo, M. R. (2009). Physician communication and patient adherence to treatment: A meta-analysis. Medical Care, 47, 826-834. doi:10.1097/MLR.0b013e31819a5acc
28. Hood, L., & Friend, S. H. (2011). Predictive, personalized, preventive, participatory (P4) cancer medicine. Nature Reviews Clinical Oncology, 8, 184-187.
29. Horn, E. J., Baxter, K., O'Leary, J., & Terry, S. F. (2011). Exploring priorities for public health genomics. Genetic Testing and Molecular Biomarkers, 15, 741-742. doi:10.1089/gtmb.2011.1525
30. Howard, H. C., & Borry, P. (2012). Is there a doctor in the house?: The presence of physicians in the direct-to-consumer genetic testing context. Journal of Community Genetics, 3, 105-112. doi:10.1007/s12687-011-0062-0
31. Institute of Medicine, Committee on Assessing Interactions Among Social, Behavioral, and Genetic Factors in Health. (2006). Genes, behavior, and the social environment: Moving beyond the nature/nurture debate. Washington, DC: National Academies Press.
32. Ioannidis, J. P., Thomas, G., & Daly, M. J. (2009). Validating, augmenting and refining genome-wide association signals. Nature Reviews Genetics, 10, 318-329. doi:10.1038/nrg2544
33. Khoury, M. J., Bowen, M. S., Burke, W., Coates, R. J., Dowling, N. F., Evans, J. P.,...St.Pierre, J. (2011). Current priorities for public health practice in addressing the role of human genomics in improving population health. American Journal of Preventive Medicine, 40, 486-493. doi:10.1016/j.amepre.2010.12.009
34. Khoury, M. J., McBride, C. M., Schully, S. D., Ioannidis, J. P., Feero, W. G., Janssens, A. C.,...Xu,J.(2009). The Scientific Foundation for personal genomics: Recommendations from a National Institutes of Health-Centers for Disease Control and Prevention multidisciplinary workshop. Genetics in Medicine, 11, 559-567. doi:10.1097/ GIM.0b013e3181b13a6c
35. Lander, E. S. (2011). Initial impact of the sequencing of the human genome. Nature, 470, 187-197. doi:10.1038/nature09792
36. Lerman, C., & Croyle, R. (1994). Psychological issues in genetic testing for breast cancer susceptibility. Archives of Internal Medicine, 154, 609-616. doi:10.1001/archinte.1994.00420060027003
37. Lerman, C., Croyle, R. T., Tercyak, K. P., & Hamann, H. (2002). Genetic testing: Psychological aspects and implications. Journal of Consulting and Clinical Psychology, 70, 784-797. doi:10.1037/0022006X.70.3.784
38. Lerman, C., & Croyle, R. T. (1995). Genetic testing for cancer predisposition: Behavioral science issues. Journal of the National Cancer Institute. Monographs, 63-66.
39. Lerman, C., Rimer, B. K., & Engstrom, P. F. (1991). Cancer risk notification: Psychosocial and ethical implications. Journal of Clinical Oncology, 9, 1275-1282.
40. Lerman, C. (1997). Translational behavioral research in cancer genetics. Preventive Medicine: An International Journal Devoted to Practice and Theory, 26, S65-S69. doi:10.1006/pmed.1997.0204
41. Leventhal, H., Kelly, K., & Leventhal, E. A. (1999). Population risk, actual risk, perceived risk, and cancer control: A discussion. Journal of the National Cancer Institute. Monographs, 81-85. doi:10.1093/ oxfordjournals.jncimonographs.a024214
42. Levy, D. E., Byfield, S. D., Comstock, C. B., Garber, J. E., Syngal, S., Crown, W. H.,...Shields, A. E. (2011). Underutilization of BRCA1/2 testing to guide breast cancer treatment: Black and Hispanic women particularly at risk. Genetics in Medicine, 13, 349-355. doi:10.1097/ GIM.0b013e3182091ba4
43. Lipkus, I. M. (2007). Numeric, verbal, and visual formats of conveying health risks: Suggested best practices and future recommendations. Medical Decision Making, 27, 696-713. doi:10.1177/ 0272989X07307271
44. Mabry, P. L., Olster, D. H., Morgan, G. D., & Abrams, D. B. (2008). Interdisciplinarity and systems science to improve population health: A view from the NIH Office of Behavioral and Social Sciences Research. American Journal of Preventive Medicine, 35, S211-S224. doi:10.1016/ j.amepre.2008.05.018
45. Manolio, T. A., Collins, F. S., Cox, N. J., Goldstein, D. B., Hindorff, L. A., Hunter, D.J., Visscher, P. M. (2009). Finding the missing heritability of complex diseases. Nature, 461, 747-753. doi:10.1038/nature08494
46. Mardis, E. R. (2011). A decade's perspective on DNA sequencing technology. Nature, 470, 198-203. doi:10.1038/nature09796
47. Marteau, T. M., & Weinman, J. (2006). Self-regulation and the behavioural response to DNA risk information: A theoretical analysis and framework for future research. Social Science & Medicine, 62, 1360-1368. doi: 10.1016/j.socscimed.2005.08.005
48. McBride, C. M., Bowen, D., Brody, L. C., Condit, C. M., Croyle, R. T., Gwinn, M.,...Valente T. W. (2010). Future health applications of genomics: Priorities for communication, behavioral, and social sciences research. American Journal of Preventive Medicine, 38, 556-561. doi: 10.1016/j.amepre.2010.01.027
49. Miller, S. M., Shoda, Y., & Hurley, K. (1996). Applying cognitive-social theory to health-protective behavior: Breast self-examination in cancer screening. Psychological Bulletin, 119, 70-94. doi:10.1037/00332909.119.1.70
50. Myers, M. F. (2011). Health care providers and direct-to-consumer access and advertising of genetic testing in the United States. Genome Medicine, 3, 81. doi:10.1186/gm297
51. O'Neill, S. C., McBride, C. M., Alford, S. H., & Kaphingst, K. A. (2010). Preferences for genetic and behavioral health information: The impact of risk factors and disease attributions. Annals of Behavioral Medicine, 40, 127-137. doi:10.1007/s12160-010-9197-1
52. O'Neill, S. C., Rini, C., Goldsmith, R. E., Valdimarsdottir, H., Cohen, L. H., & Schwartz, M. D. (2009). Distress among women receiving uninformative BRCA1/2 results: 12-month outcomes. Psycho-Oncology, 18, 1088-1096. doi:10.1002/pon.1467
53. Pagon, R. A. (2002). Genetic testing for disease susceptibilities: Consequences for genetic counseling. Trends in Molecular Medicine, 8, 306307. doi:10.1016/S1471-4914(02)02348-1
54. Patenaude, A. F., Guttmacher, A. E., & Collins, F. S. (2003). Psychologists' contributions to the genetic revolution. American Psychologist, 58, 319-320. doi:10.1037/0003-066X.58.4.319b
55. Patenaude, A. F. (2011). Commentary: Save the children: Direct-toconsumer testing of children is premature, even for research. Journal of Pediatric Psychology, 36, 1122-1127. doi:10.1093/jpepsy/jsr068
56. Persky, S., & McBride, C. M. (2009). Immersive virtual environment technology: A promising tool for future social and behavioral genomics research and practice. Health Communication, 24, 677-682. doi: 10.1080/10410230903263982
57. Pieterse, A. H., van Dulmen, A. M., Beemer, F. A., Bensing, J. M., & Ausems, M. G. (2007). Cancer genetic counseling: Communication and counselees' post-visit satisfaction, cognitions, anxiety, and needs fulfillment. Journal of Genetic Counseling, 16, 85-96. doi:10.1007/s10897006-9048-1
58. Portnoy, D. B., Roter, D., & Erby, L. H. (2010). The role of numeracy on client knowledge in BRCA genetic counseling. Patient Education and Counseling, 81, 131-136. doi:10.1016/j.pec.2009.09.036
59. Rini, C., O'Neill, S. C., Valdimarsdottir, H., Goldsmith, R. E., Jandorf, L., Brown, K.,...Schwartz, M. (2009). Cognitive and emotional factors predicting decisional conflict among high-risk breast cancer survivors who receive uninformative BRCA1/2 results. Health Psychology, 28, 569-578. doi:10.1037/a0015205
60. Rolland, J. S., & Williams, J. K. (2005). Toward a biopsychosocial model for 21st-century genetics. Family Process, 44, 3-24. doi:10.1111/j.15455300.2005.00039.x
61. Rolland, J. S. (1990). Anticipatory loss: A family systems developmental framework. Family Process, 29, 229-244. doi:10.1111/j.15455300.1990.00229.x
62. Roter, D., Ellington, L., Erby, L. H., Larson, S., & Dudley, W. (2006). The Genetic Counseling Video Project (GCVP): Models of practice. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 142C, 209-220. doi:10.1002/ajmg.c.30094
63. Roter, D., & Larson, S. (2002). The Roter interaction analysis system (RIAS): utility and flexibility for analysis of medical interactions. Patient Education and Counseling, 46, 243-251. doi:10.1016/S07383991(02)00012-5
64. Roter, D. L., Erby, L., Larson, S., & Ellington, L. (2009). Oral literacy demand of prenatal genetic counseling dialogue: Predictors of learning. Patient Education and Counseling, 75, 392-397. doi:10.1016/ j.pec.2009.01.005
65. Roter, D. L., Erby, L. H., Hall, J. A., Larson, S., Ellington, L., & Dudley, W. (2008). Nonverbal sensitivity: Consequences for learning and satisfaction in genetic counseling. Health Education, 108, 397-410. doi: 10.1108/09654280810900017
66. Roter, D. L., Hall, J. A., Kern, D. E., Barker, L. R., Cole, K. A., & Roca, R. P. (1995). Improving physicians' interviewing skills and reducing patients' emotional distress. A randomized clinical trial. Archives of Internal Medicine, 155, 1877-1884. doi:10.1001/archinte.1995 .00430170071009
67. Roter, D. L., Larson, S., Fischer, G. S., Arnold, R. M., & Tulsky, J. A. (2000). Experts practice what they preach: A descriptive study of best and normative practices in end-of-life discussions. Archives of Internal Medicine, 160, 3477-3485. doi:10.1001/archinte.160.22.3477
68. Samuel, G. N., Jordens, C. F., & Kerridge, I. (2010). Direct-to-consumer personal genome testing: Ethical and regulatory issues that arise from wanting to 'know' your DNA. Internal Medicine Journal, 40, 220-224. doi:10.1111/j.1445-5994.2010.02190.x
69. Schwartz, M. D., Valdimarsdottir, H. B., DeMarco, T. A., Peshkin, B. N., Lawrence, W., Rispoli, J.,...Komaridis, K. (2009). Randomized trial of a decision aid for BRCA1/BRCA2 mutation carriers: Impact on measures of decision making and satisfaction. Health Psychology, 28, 11-19. doi:10.1037/a0013147
70. Swanson, J. M., Kinsbourne, M., Nigg, J., Lanphear, B., Stefanatos, G. A., Volkow, N.,...Wadhwa, P. D. (2007). Etiologic subtypes of attentiondeficit/hyperactivity disorder: Brain imaging, molecular genetic and environmental factors and the dopamine hypothesis. Neuropsychology Review, 17, 39-59. doi:10.1007/s11065-007-9019-9
71. Tabor, H. K., Berkman, B. E., Hull, S. C., & Bamshad, M. J. (2011). Genomics really gets personal: How exome and whole genome sequencing challenge the ethical framework of human genetics research. American Journal of Medical Genetics. Part A, 155A, 2916-2924. doi: 10.1002/ajmg.a.34357
72. Tarini, B. A., Tercyak, K. P., & Wilfond, B. S. (2011). Children and predictive genomic testing: Disease prevention, research protection, and our future. Journal of Pediatric Psychology, 36, 1113-1121. doi: 10.1093/jpepsy/jsr040
73. Tercyak, K. P. (2010). Handbook of genomics and the family: Psychosocial context for children and adolescents. New York, NY: Springer.
74. van Roosmalen, M. S., Stalmeier, P. F., Verhoef, L. C., Hoekstra-Weebers, J. E., Oosterwijk, J. C., Hoogerbrugge, N.,...vanDaal, W. A. J. (2004). Randomised trial of a decision aid and its timing for women being tested for a BRCA1/2 mutation. British Journal of Cancer, 90, 333-342. doi:10.1038/sj.bjc.6601525
75. Wade, C. H., & Wilfond, B. S. (2006). Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 142C, 284-292. doi:10.1002/ ajmg.c.30110