title: Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers.
abstract: OBJECTIVE
  As direct-to-consumer genetic testing becomes more available, a diverse group of consumers, including those with limited health literacy, may consider testing. In light of concerns raised about direct-to-consumer genetic testing, this study sought to critically examine whether the informational content, literacy demands, and usability of health-related direct-to-consumer websites met existing recommendations.
  
  
  METHODS
  A content analysis was performed on 29 health-related direct-to-consumer websites. Two coders independently evaluated each website for informational content (e.g., benefits, limitations), literacy demands (e.g., reading level), and usability (e.g., ease of navigation).
  
  
  RESULTS
  Most sites presented health conditions and some markers for which they tested, benefits of testing, a description of the testing process, and their privacy policy. Fewer cited scientific literature, explained test limitations, or provided an opportunity to consult a health professional. Key informational content was difficult to locate on most sites. Few sites gave sample disease risk estimates or used common language and explained technical terms consistently. Average reading level was grade 15.
  
  
  CONCLUSIONS
  The quality of informational content, literacy demands, and usability across health-related direct-to-consumer websites varied widely. Many users would struggle to find and understand the important information. For consumers to better understand the content on these sites and evaluate the meaning of the tests for their health, sites should lower the demands placed on users by distilling and prioritizing the key informational content while simultaneously attending to the reading level and usability elements. In the absence of regulation compelling such changes, government agencies or professional organizations may need to increase consumer and provider awareness of these issues.
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Christina R
authors.initials: CR
authors.lastname: Lachance
authors.forename: Lori A H
authors.initials: LA
authors.lastname: Erby
authors.forename: Beth M
authors.initials: BM
authors.lastname: Ford
authors.forename: Vincent C
authors.initials: VC
authors.lastname: Allen
authors.forename: Kimberly A
authors.initials: KA
authors.lastname: Kaphingst
mesh_terms: D003695:Delivery of Health Care / Q000592:standards; D004522:Educational Status; D057220:Health Literacy; D006801:Humans; D007182:Income; D018907:Privacy / Q000331:legislation & jurisprudence
references.citation: Genet Med. 2008 Nov;10(11):784-96
references.pmid: 18941418
references.citation: Cancer Epidemiol Biomarkers Prev. 2009 Apr;18(4):1303-11
references.pmid: 19318436
references.citation: Am J Hum Genet. 2008 Mar;82(3):593-9
references.pmid: 18319070
references.citation: Nature. 2009 Oct 8;461(7265):724-6
references.pmid: 19812653
references.citation: Genet Med. 2009 Aug;11(8):595
references.pmid: 19680046
references.citation: Nature. 2008 Nov 6;456(7218):34-5
references.pmid: 18987720
references.citation: Cancer Causes Control. 2006 Mar;17(2):147-51
references.pmid: 16425092
references.citation: J Clin Pharmacol. 2009 Aug;49(8):886-8
references.pmid: 19602717
references.citation: Public Health Genomics. 2010;13(2):95-105
references.pmid: 19556748
references.citation: Ethics Med. 2006 Summer;22(2):83-91
references.pmid: 17115513
references.citation: Med Decis Making. 2001 Jan-Feb;21(1):37-44
references.pmid: 11206945
references.citation: Genet Med. 2003 Jul-Aug;5(4):332-7
references.pmid: 12865763
references.citation: Nicotine Tob Res. 2004 Apr;6(2):207-19
references.pmid: 15203794
references.citation: J Health Commun. 2004 Nov-Dec;9(6):515-28
references.pmid: 15764450
references.citation: J Med Internet Res. 2004 Sep 03;6(3):e25
references.pmid: 15471751
references.citation: Genet Med. 2009 Aug;11(8):588-94
references.pmid: 19636253
references.citation: Eur J Cancer Prev. 2005 Feb;14(1):69-75
references.pmid: 15677898
references.citation: Mayo Clin Proc. 2005 Jan;80(1):63-73
references.pmid: 15667031
references.citation: Genet Test. 2008 Mar;12(1):13-23
references.pmid: 18373401
references.citation: JAMA. 2002 Oct 9;288(14):1762-7
references.pmid: 12365961
references.citation: Genet Med. 2008 Nov;10(11):778-83
references.pmid: 18941419
references.citation: Genet Med. 2004 Jan-Feb;6(1):60
references.pmid: 14726812
references.citation: Public Health Genomics. 2011;14(4-5):279-89
references.pmid: 20407217
references.citation: Public Health Genomics. 2009;12(2):92-104
references.pmid: 19039253
references.citation: Clin Ther. 1998;20 Suppl C:C86-95
references.pmid: 9915094
references.citation: Annu Rev Genomics Hum Genet. 2008;9:161-82
references.pmid: 18767961
references.citation: J Genet Couns. 2004 Aug;13(4):305-20
references.pmid: 19736696
references.citation: Nature. 2003 Apr 24;422(6934):835-47
references.pmid: 12695777
references.citation: Obstet Gynecol. 2007 Dec;110(6):1392-5
references.pmid: 18055737
references.citation: Genet Med. 2009 Aug;11(8):568-9
references.pmid: 19606051
references.citation: N Engl J Med. 2003 Sep 4;349(10):996-8
references.pmid: 12954750
references.citation: JAMA. 2007 Jul 11;298(2):218-21
references.pmid: 17622604
references.citation: N Engl J Med. 2008 Jan 10;358(2):105-7
references.pmid: 18184955