Educating the general public about multifactorial genetic disease: Applying a theory-based framework to understand current public knowledge

Genetics in Medicine

Volumn 10, Issue 4, 2008, Pages 251-258

  Smerecnik, Chris M R ^a   Mesters, Ilse ^a   De Vries, Nanne K ^a   De Vries, Hein ^a  

^a MAASTRICHT UNIVERSITY   (Netherlands)

Author keywords

Awareness; General public; Genetic risk; Knowledge; Multifactorial disease

Indexed keywords

AWARENESS; BREAST CANCER; CANCER RISK; COLORECTAL CANCER; DISEASE PREDISPOSITION; GENETIC RISK; GENOTYPE ENVIRONMENT INTERACTION; HEALTH EDUCATION; HEART DISEASE; HUMAN; KNOWLEDGE; LIFESTYLE; REVIEW; RISK FACTOR; UTERINE CERVIX CANCER;

DATABASES, FACTUAL; GENETIC PREDISPOSITION TO DISEASE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MULTIFACTORIAL INHERITANCE; PATIENT EDUCATION AS TOPIC; RISK FACTORS;

EID: 42149133169     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/GIM.0b013e31816b4ffd     Document Type: Review

References (50)

1. Collins FS, Green ED, Guttmacher AE, Guyer MS. A vision for the future of genomics research. Nature 2003;422:835-847.
2. World Health Organization. Genomics and world health. Geneva: World Health Organization, 2002.
3. Center for Disease Control. Genetic information presents many new opportunities to improve health and prevent disease. Available at: http://www.cdc.gov/genomics/population/file/print/opportunity.pdf. Accessed April 19, 2007.
4. Khoury MJ, Thrasher JF, Burke W, Gettig EA, et al. Challenges in communicating genetics: a public health approach. Genet Med 2000;2:198-202.
5. Kardia SL, Wang C. The role of health education and behavior in public health genetics. Health Educ Behav 2005;32:583-588.
6. Prochaska JO, DiClemente CC. The transtheoretical approach: crossing traditional boundaries of therapy. Homewood, IL: Dow Jones-Irwin, 1984.
7. Prochaska JO, DiClemente CC. Stages of change in the modification of problem behaviors. Prog Behav Modif 1992;28:184-218.
8. Weinstein ND. The precaution adoption process. Health Psychol 1988;7:355-386.
9. Rogers EM. Diffusion of innovations, 5th ed. New York: Free Press, 2003.
10. Geibert RC. Using diffusion of innovation concepts to enhance implementation of an electronic health record to support evidence-based practice. Nurs Adm Q 2006;30:203-210.
11. Kautz K, Larsen EA. Diffusion theory and practice. Disseminating quality management and software process improvement innovations. Inform Tech People 2000;13:11-26.
12. Jallinoja P, Aro AR. Does knowledge make a difference? The association between knowledge about genes and attitudes toward gene tests. J Health Commun 2000;5:29-39.
13. Chapple A, May C, Campion P. Lay understanding of genetic disease: a British study of families attending a genetic counseling service. J Genet Couns 1995;4:281-300.
14. van de Nieuwenhoff HWP, Mesters I, Gielen C, de Vries NK. Family communication regarding inherited high cholesterol: why and how do patients disclose genetic risk? Soc Sci Med 2007;65:1025-1037.
15. Khoury MJ. Genetics and genomics in practice: The continuum from genetic disease to genetic information in health and disease. Genet Med 2003;5:261-268.
16. Health Council of the Netherlands. Public awareness about genetics. The Hague: Health Council of the Netherlands, 2003. Report No.: 2003/05.
17. Richards M, Ponder M. Lay understanding of genetics: a test of a hypothesis. J Med Genet 1996;33:1032-1036.
18. Waller J, McCaffery K, Wardle J. Beliefs about the risk factors for cervical cancer in a British population sample. Prev Med 2004;38:745-753.
19. Ackermann S, Renner SP, Fasching PA, Poehls U, et al. Awareness of general and personal risk factors for uterine cancer among healthy women. Eur J Cancer Prev 2005;14:519-524.
20. Mogilner A, Otten M, Cunningham JD, Brower ST. Awareness and attitudes concerning BRCA gene testing. Ann Surg Oncol. 1998;5:607-612.
21. Tambor ES, Rimer BK, Strigo TS. Genetic testing for breast cancer susceptibility: awareness and interest among women in the general population. Am J Med Genet. 1997;68:43-49.
22. van den Nieuwenhoff HWP, Mesters I, de Vries NK. Public awareness of the existence of inherited high cholesterol. Eur J Cardiovasc Prev Rehabil 2006;13:990-992.
23. 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.
24. Bates BR, Templeton A, Achter PJ, Harris TM, et al. What does 'a gene for heart disease' mean? A focus group study of public understandings of genetic risk factors. Am J Med Genet A 2003;119:156-161.
25. Inoue M, Iwasaki M, Otani T, Sasazuki S, et al. Public awareness of risk factors for cancer among the Japanese general population: a population-based survey. BMC Public Health 2006;6:2.
26. Mesters I, Ausems A, de Vries H. General public's knowledge, interest and information needs related to genetic cancer: an exploratory study. Eur J Cancer Prev 2005;14:69-75.
27. McMenamin M, Barry H, Lennon AM, Purcell H, et al. A survey of breast cancer awareness and knowledge in a Western population: lots of light but little illumination. Eur J Cancer 2005;41:393-397.
28. de Vries H, Mesters I, van de Steeg H, Honing C. The general public's information needs and perceptions regarding hereditary cancer: an application of the Integrated Change Model. Patient Educ Couns 2005;56:154-165.
29. Henneman L, Timmermans DRM, van der Wal G. Public experiences, knowledge and expectations about medical genetics and the use of genetic information. Community Genet 2004;7:33-43.
30. Emery J, Kumar S, Smith H. Patient understanding of genetic principles and their expectations of genetic services within NHS: a qualitative study. Community Genet 1998;1:78-83.
31. Hendriks JJJ, de Vries H. Erfelijkheid en kanker: focusgroep interviews naar opvattingen van Nederlanders [Heredity and cancer: focus-group interviews of Dutch opinions]. Maastricht: University of Maastricht, 2002.
32. Honda K.Whogets the information about genetic testing for cancer risk? The role of race/ethnicity, immigration status, and primary care clinicians. Clin Genet 2003;64:131-136.
33. Einsiedel EF. The challenges of translating genomic knowledge. Clin Genet 2006;70:433-437.
34. Chen LS, Goodson P. Public health genomics knowledge and attitudes: a survey of public health educators in the United States. Genet Med 2007;9:496-503.
35. Baars M, Henneman L, ten Kate LP. Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem. Genet Med 2005;7:605-610.
36. Baars M, Scherpbier AJJA, Schuwirth LW, Henneman L, et al. Deficient knowledge of genetics relevant for daily practice among medical students nearing graduation. Genet Med 2005;7:295-301.
37. WonkamA, Njamnshi AK, Angwafo FFI. Knowledge and attitudes concerning medical genetics amongst physicians and medical students in Cameroon (sub-Saharan Africa). Genet Med 2006;8:331-338.
38. Lerman C, Narod S, Schulman K, Hughes C, et al. BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes. JAMA 1996;275:1885-1892.
39. Lanie AD, Epstein Jayaratne T, Sheldon JP, Kardia SLR, et al. Exploring the public understanding of basic genetic concepts. J Genet Couns 2004;13:305-320.
40. Richards M. Lay and professional knowledge of genetics and inheritance. Public Underst Sci 1996;5:217-230.
41. Renner CH, Renner MJ. But I thought I knew that: using confidence estimation as a debiasing technique to improve classroom performance. Appl Cogn Psychol 2001;15:23-32.
42. Marteau TM, Lerman C. Genetic risk and behavioural change. BMJ 2001;322:1056-1059.
43. Bottorff JL, Ratner PA, Balneaves LG, Richardson CG, et al. Women's interest in genetic testing for breast cancer risk: the influence of socidemographics and knowledge. Cancer Epidemiol Biomarkers Prev 2002;11:89-95.
44. Bruno M, Tommasi S, Stea B, Quaranta M, et al. Awareness of breast cancer genetics and interest in predictive genetic testing: a survey of a southern Italian population. Ann Oncol 2004;15(suppl 1):i48-i54.
45. Hunt K, Emslie C, Watt G. Lay constructions of a family history of heart disease: potential for misunderstandings in the clinical encounter? Lancet 2001;357:1168-1171.
46. Keighley MRB, O'Morain C, Giacosa A, Ashorn M, et al. Public awareness of risk factors and screening for colorectal cancer in Europe. Eur J Cancer Prev 2004;13:257-262.
47. Morris J, Gwinn M, Clyne M, Khoury MJ. Public knowledge regarding the role of genetic susceptibility to environmentally induced health conditions. Community Genet 2003;6:22-28.
48. Wardle J, Waller J, Brunswick N, Jarvis MJ. Awareness of risk factors for cancer among British adults. Public Health 2001;115:173-174.
49. Welkenhuysen M, Evers-Kiebooms G, Decruyenaere M, Claes E, et al. A community based study on intentions regarding predictive testing for hereditary breast cancer. J Med Genet 2001;38:540-547.
50. Seemann K. Basic principles of holistic technology education. J Technol Educ 2003;14:28-39.