Consumers’ use of web-based information and their decisions about multiplex genetic susceptibility testing

Journal of Medical Internet Research

Volumn 12, Issue 3, 2010, Pages

  Kaphingst, Kimberly A ^a   McBride, Colleen M ^a   Wade, Christopher ^a   Alford, Sharon Hensley ^b   Brody, Lawrence C ^a   Baxevanis, Andreas D ^a  

^a NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

^b HENRY FORD HOSPITAL   (United States)

Author keywords

Attitudes; Genetic testing methods; genetic testing psychology; genetic predisposition to disease psychology; health knowledge; Practice; health surveys; internet utilization; polymorphism; Single nucleotide; public health methods; risk assessment methods

Indexed keywords

ADULT; ARTICLE; DECISION MAKING; GENETIC PREDISPOSITION; GENETIC SCREENING; HEALTH MAINTENANCE ORGANIZATION; HUMAN; INTERNET; METHODOLOGY; REGRESSION ANALYSIS; STANDARD; TEACHING;

ADULT; DECISION MAKING; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HEALTH MAINTENANCE ORGANIZATIONS; HUMANS; INTERNET; REGRESSION ANALYSIS; TEACHING;

MLCS; MLOWN;

EID: 78349234626     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.1587     Document Type: Article

References (30)

1. McBride CM, Alford SH, Reid RJ, Larson EB, Baxevanis AD, Brody LC. Putting science over supposition in the arena of personalized genomics. Nat Genet 2008 Aug;40(8):939-942 [FREE Full text] [doi: 10.1038/ng0808-939] [Medline: 18665132]
2. Collins FS, Green ED, Guttmacher AE, Guyer MS. A vision for the future of genomics research. Nature 2003 Apr 24;422(6934):835-847. [doi: 10.1038/nature01626] [Medline: 12695777]
3. Topol EJ, Murray SS, Frazer KA. The genomics gold rush. JAMA 2007 Jul 11;298(2):218-221. [doi: 10.1001/jama.298.2.218] [Medline: 17622604]
4. Katsanis SH, Javitt G, Hudson K. Public health. A case study of personalized medicine. Science 2008 Apr 4;320(5872):53-54. [doi: 10.1126/science.1156604] [Medline: 18388277]
5. McBride CM, Alford SH, Reid RJ, Larson EB, Baxevanis AD, Brody LC. Characteristics of users of online personalized genomic risk assessments: implications for physician-patient interactions. Genet Med 2009 Aug;11(8):582-587. [doi: 10.1097/GIM.0b013e3181b22c3a] [Medline: 19606049]
6. Hensley Alford S, McBride CM, Reid RJ, Larson EB, Baxevanis AD, Brody LC. Participation in genetic testing research varies by social group. Public Health Genomics 2010 Mar 18. [doi: 10.1159/000294277] [Medline: 20299772]
7. Hunter DJ, Khoury MJ, Drazen JM. Letting the genome out of the bottle-will we get our wish? N Engl J Med 2008 Jan 10;358(2):105-107. [doi: 10.1056/NEJMp0708162] [Medline: 18184955]
8. Gollust SE, Hull SC, Wilfond BS. Limitations of direct-to-consumer advertising for clinical genetic testing. JAMA 2002 Oct 9;288(14):1762-1767. [Medline: 12365961]
9. Wasson K, Cook ED, Helzlsouer K. Direct-to-consumer online genetic testing and the four principles: an analysis of the ethical issues. Ethics Med 2006;22(2):83-91. [Medline: 17115513]
10. Ensenauer RE, Michels VV, Reinke SS. Genetic testing: practical, ethical, and counseling considerations. Mayo Clin Proc 2005 Jan;80(1):63-73 [FREE Full text] [Medline: 15667031]
11. Geransar R, Einsiedel E. Evaluating online direct-to-consumer marketing of genetic tests: informed choices or buyers beware? Genet Test 2008 Mar;12(1):13-23. [doi: 10.1089/gte.2007.0024] [Medline: 18373401]
12. Goddard KA, Robitaille J, Dowling NF, Parrado AR, Fishman J, Bradley LA, et al. Health-related direct-to-consumer genetic tests: a public health assessment and analysis of practices related to Internet-based tests for risk of thrombosis. Public Health Genomics 2009;12(2):92-104 [FREE Full text] [doi: 10.1159/000176794] [Medline: 19039253]
13. Horrigan J. Home Broadband Adoption 2006. Washington, DC: Pew Internet & American Life Project; 2006 May 27. URL: http://www.pewinternet.org/Reports/2006/Home-Broadband-Adoption-2006.aspx?r=1[WebCite Cache ID 5qTyun0aa]
14. Sanderson SC, O'Neill SC, White DB, Bepler G, Bastian L, Lipkus IM, et al. Responses to online GSTM1 genetic test results among smokers related to patients with lung cancer: a pilot study. Cancer Epidemiol Biomarkers Prev 2009 Jul;18(7):1953-1961 [FREE Full text] [doi: 10.1158/1055-9965.EPI-08-0620] [Medline: 19567511]
15. Birru MS, Monaco VM, Charles L, Drew H, Njie V, Bierria T, et al. Internet usage by low-literacy adults seeking health information: an observational analysis. J Med Internet Res 2004 Sep 3;6(3):e25 [FREE Full text] [doi: 10.2196/jmir.6.3.e25] [Medline: 15471751]
16. Kaphingst KA, Zanfini CJ, Emmons KM. Accessibility of web sites containing colorectal cancer information to adults with limited literacy (United States). Cancer Causes Control 2006 Mar;17(2):147-151. [doi: 10.1007/s10552-005-5116-3] [Medline: 16425092]
17. Johnson JD, Case DO, Andrews JE, Allard SL. Genomics-the perfect information-seeking research problem. J Health Commun 2005 Jun;10(4):323-329. [doi: 10.1080/10810730590950048] [Medline: 16036739]
18. Lachance CR, Erby LA, Ford BM, Allen VC J, Kaphingst KA. Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers. Genet Med 2010;12(5):304-312. [doi: 10.1097/GIM.0b013e3181dbd8b2] [Medline: 20386454]
19. Ropka ME, Wenzel J, Phillips EK, Siadaty M, Philbrick JT. Uptake rates for breast cancer genetic testing: a systematic review. Cancer Epidemiol Biomarkers Prev 2006 May;15(5):840-855 [FREE Full text] [doi: 10.1158/1055-9965.EPI-05-0002] [Medline: 16702359]
20. Hadley DW, Jenkins J, Dimond E, Nakahara K, Grogan L, Liewehr DJ, et al. Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Arch Intern Med 2003 Mar 10;163(5):573-582 [FREE Full text] [Medline: 12622604]
21. Doak C, Doak L, Root J. Teaching Patients with Low Literacy Skills, 2nd edition. Philadelphia, PA: J B Lippincott Company; 1996.
22. US Department of Health and Human Services. Usability.gov. 2006. Research-Based Web Design & Usability GuidelinesURL: http://www.usability.gov/guidelines/[WebCite Cache ID 5qTzsgzzW]
23. Lipkus IM, Hollands JG. The visual communication of risk. J Natl Cancer Inst Monogr 1999(25):149-163. [Medline: 10854471]
24. Fagerlin A, Ubel PA, Smith DM, Zikmund-Fisher BJ. Making numbers matter: present and future research in risk communication. Am J Health Behav 2007;31 Suppl 1:S47-S56. [doi: 10.5555/ajhb.2007.31.supp.S47] [Medline: 17931136]
25. Griffin RJ, Dunwoody S, Neuwirth K. Proposed model of the relationship of risk information seeking and processing to the development of preventive behaviors. Environ Res 1999 Feb;80(2 Pt 2):S230-S245. [doi: 10.1006/enrs.1998.3940] [Medline: 10092438]
26. Parrott R, Silk K, Raup Krieger J, Harris T, Condit C. Behavioral health outcomes associated with religious faith and media exposure about human genetics. Health Commun 2004;16(1):29-45. [doi: 10.1207/S15327027HC1601_3] [Medline: 14979850]
27. Hosmer D, Lemeshow S. Applied Logistic Regression. New York, NY: John Wiley and Sons, Inc; 2000.
28. Maldonado G, Greenland S. Simulation study of confounder-selection strategies. Am J Epidemiol 1993 Dec 1;138(11):923-936. [Medline: 8256780]
29. Budtz-Jørgensen E, Keiding N, Grandjean P, Weihe P. Confounder selection in environmental epidemiology: assessment of health effects of prenatal mercury exposure. Ann Epidemiol 2007 Jan;17(1):27-35. [doi: 10.1016/j.annepidem.2006.05.007] [Medline: 17027287]
30. Baron RM, Kenny DA. The moderator-mediator variable distinction in social psychological research: conceptual, strategic, and statistical considerations. J Pers Soc Psychol 1986 Dec;51(6):1173-1182. [Medline: 3806354]