Internet-based direct-to-consumer genetic testing: A systematic review

Journal of Medical Internet Research

Volumn 17, Issue 12, 2015, Pages

  Covolo, Loredana ^a   Rubinelli, Sara ^b   Ceretti, Elisabetta ^a   Gelatti, Umberto ^a  

^a UNIVERSITY OF BRESCIA   (Italy)

^b SWISS PARAPLEGIC RESEARCH   (Switzerland)

Author keywords

Direct to consumer; Genetic testing; Internet; Online market; Systematic review

Indexed keywords

CHECKLIST; CONSUMER; CONTENT ANALYSIS; EMBASE; GENETIC RISK; GENETIC SCREENING; GENETIC SUSCEPTIBILITY; HEALTH BEHAVIOR; HUMAN; INTERNET; MARKET; MEDLINE; PERCEPTION; SYSTEMATIC REVIEW; WEB OF SCIENCE; ADULT; MALE; PROCEDURES; SCREENING TEST; UTILIZATION;

ADULT; DIRECT-TO-CONSUMER SCREENING AND TESTING; GENETIC TESTING; HUMANS; INTERNET; MALE;

EID: 84954349658     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.4378     Document Type: Article

References (147)

1. Niccol A. Gattaca. Los Angeles, CA: Columbia pictures; 1997. URL: Http://www.imdb.com/title/tt0119177/quotes [WebCite Cache ID 6d6WcaXRO]
2. easy-DNA. URL: Https://www.easy-dna.com/genetic-predisposition-dna-Testing/[accessed 2015-11-16] [WebCite Cache ID 6d51iF0xK]
3. Test Country. Test Country. URL: Http://www.testcountry.com/products.html?product=1966 [accessed 2015-02-12] [WebCite Cache ID 6WI0DmVaE]
4. Inherent Health. URL: Http://www.inherenthealth.com/[accessed 2015-02-12] [WebCite Cache ID 6WI0MYcrT]
5. Gene Partner. URL: Http://www.genepartner.com/[accessed 2015-02-12] [WebCite Cache ID 6WI01otjv]
6. Cornel MC, van El CG, Borry P. The challenge of implementing genetic tests with clinical utility while avoiding unsound applications. J Community Genet 2014 Jan; 5(1): 7-12 [FREE Full text] [doi: 10.1007/s12687-012-0121-1] [Medline: 23055102]
7. Janssens CW, Gwinn M, Bradley LA, Oostra BA, van Duijn CM, Khoury MJ. A critical appraisal of the scientific basis of commercial genomic profiles used to assess health risks and personalize health interventions. Am J Hum Genet 2008 Mar; 82(3): 593-599 [FREE Full text] [doi: 10.1016/j.ajhg.2007.12.020] [Medline: 18319070]
8. Berg C, Fryer-Edwards K. The Ethical Challenges of Direct-To-Consumer Genetic Testing. J Bus Ethics 2008; 77: 17-31.
9. Borry P, Cornel MC, Howard HC. Where are you going, where have you been: A recent history of the direct-To-consumer genetic testing market. J Community Genet 2010 Sep; 1(3): 101-106 [FREE Full text] [doi: 10.1007/s12687-010-0023-z] [Medline: 21475669]
10. Hogarth S. Myths, misconceptions and myopia: Searching for clarity in the debate about the regulation of consumer genetics. Public Health Genomics 2010; 13(5): 322-326 [FREE Full text] [doi: 10.1159/000313330] [Medline: 20588076]
11. Kutz G. Direct-To-consumer genetic tests: Misleading test results are further complicated by deceptive marketing and other questionable practices.: United States Government Accountability Office URL: Http://www.gao.gov/assets/130/125079.pdf [accessed 2015-02-12] [WebCite Cache ID 6WI0aktrv]
12. Edwards KT, Huang CJ. Bridging the consumer-medical divide: How to regulate direct-To-consumer genetic testing. Hastings Cent Rep 2014; 44(3): 17-19. [doi: 10.1002/hast.310] [Medline: 24821248]
13. Hudson K, Javitt G, Burke W, Byers P, American Society of Human Genetics Social Issues Committee. ASHG Statement on direct-To-consumer genetic testing in the United States. Obstet Gynecol 2007 Dec; 110(6): 1392-1395. [doi: 10.1097/01.AOG.0000292086.98514.8b] [Medline: 18055737]
14. European Academies Science Advisory Council (EASAC)/Federation of European Academies of Medicine. EASAC policy report 18. 2012. Direct-To-consumer genetic testing for health-related purposes in the European Union URL: Http://www.easac.eu/fileadmin/Reports/EASAC-Genetic-Testing-Web-complete.pdf [accessed 2015-02-12] [WebCite Cache ID 6WI0i2URW]
15. Skirton H, Goldsmith L, Jackson L, O'Connor A. Direct to consumer genetic testing: A systematic review of position statements, policies and recommendations. Clin Genet 2012 Sep; 82(3): 210-218. [doi: 10.1111/j.1399-0004.2012.01863.x] [Medline: 22372614]
16. Public Health Service Food and Drug Administration. Warning Letter. 2013 Nov 22. URL: Http://www.fda.gov/iceci/enforcementactions/warningletters/2013/ucm376296.htm [WebCite Cache ID 6WI0tSiDC]
17. GenePlanet. URL: Http://www.geneplanet.com/[accessed 2015-02-12] [WebCite Cache ID 6WI0yfBfI]
18. Goldsmith L, Jackson L, O'Connor A, Skirton H. Direct-To-consumer genomic testing: Systematic review of the literature on user perspectives. Eur J Hum Genet 2012 Aug; 20(8): 811-816 [FREE Full text] [doi: 10.1038/ejhg.2012.18] [Medline: 22333900]
19. Goldsmith L, Jackson L, O'Connor A, Skirton H. Direct-To-consumer genomic testing from the perspective of the health professional: A systematic review of the literature. J Community Genet 2013 Apr; 4(2): 169-180 [FREE Full text] [doi: 10.1007/s12687-012-0135-8] [Medline: 23322235]
20. Roberts JS, Ostergren J. Direct-To-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies. Curr Genet Med Rep 2013 Sep; 1(3): 182-200 [FREE Full text] [Medline: 24058877]
21. Saukko P. State of play in direct-To-consumer genetic testing for lifestyle-related diseases: Market, marketing content, user experiences and regulation. Proc Nutr Soc 2013 Feb; 72(1): 53-60 [FREE Full text] [doi: 10.1017/S0029665112002960] [Medline: 23336560]
22. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-Analyses: The PRISMA statement. PLoS Med 2009 Jul 21; 6(7): E1000097 [FREE Full text] [doi: 10.1371/journal.pmed.1000097] [Medline: 19621072]
23. Wikipedia. PageRank 2014. URL: Http://en.wikipedia.org/wiki/PageRank [WebCite Cache ID 6WI18UKJM]
24. Kmet L, Lee R, Cook L. Alberta Heritage Foundation for Medical Research. Edmonton, Canada; 2004 Feb 01. Standard Quality Assessment criteria for Evaluating Primary Research Papers from a Variety of Fields URL: Http://www.ihe.ca/advanced-search?date=2004& type=1021Archived [WebCite Cache ID 6bxHoayCU]
25. Wilde A, Meiser B, Mitchell PB, Schofield PR. Public interest in predictive genetic testing, including direct-To-consumer testing, for susceptibility to major depression: Preliminary findings. Eur J Hum Genet 2010 Jan; 18(1): 47-51 [FREE Full text] [doi: 10.1038/ejhg.2009.138] [Medline: 19690586]
26. Lynch J, Parrott A, Hopkin RJ, Myers M. Media coverage of direct-To-consumer genetic testing. J Genet Couns 2011 Oct; 20(5): 486-494. [doi: 10.1007/s10897-011-9374-9] [Medline: 21638197]
27. Rahm AK, Feigelson HS, Wagner N, Le AQ, Halterman E, Cornish N, et al. Perception of direct-To-consumer genetic testing and direct-To-consumer advertising of genetic tests among members of a large managed care organization. J Genet Couns 2012 Jun; 21(3): 448-461. [doi: 10.1007/s10897-011-9477-3] [Medline: 22278218]
28. Wasson K, Hogan NS, Sanders TN, Helzlsouer KJ. Primary Care Patients'Views, Attitudes, and Decision-Making Factors Regarding Direct-To-Consumer Personal Genome Testing: Results From a Qualitative Study. AJOB Primary Research 2012 Apr; 3(2): 24-35. [doi: 10.1080/21507716.2011.650344]
29. Adams HR, Rose K, Augustine EF, Kwon JM, deBlieck EA, Marshall FJ, et al. Experience, knowledge, and opinions about childhood genetic testing in Batten disease. Mol Genet Metab 2014 Feb; 111(2): 197-202 [FREE Full text] [doi: 10.1016/j.ymgme.2013.10.017] [Medline: 24246680]
30. Bloss CS, Ornowski L, Silver E, Cargill M, Vanier V, Schork NJ, et al. Consumer perceptions of direct-To-consumer personalized genomic risk assessments. Genet Med 2010 Sep; 12(9): 556-566. [doi: 10.1097/GIM.0b013e3181eb51c6] [Medline: 20717041]
31. Finney RL, Gollust S, Naveed S, Moser R. Increasing Public Awareness of Direct-To-Consumer Genetic Tests: Health Care Access, Internet Use, and Population Density Correlates. J Cancer Epidemiol 2012 Jul 30: 1-7. [doi: 10.1155/2012/309109]
32. Goddard K, Moore C, Ottman D, Szegda KL, Bradley L, Khoury MJ. Awareness and use of direct-To-consumer nutrigenomic tests, United States, 2006. Genet Med 2007 Aug; 9(8): 510-517. [Medline: 17700389]
33. Goddard K, Duquette D, Zlot A, Johnson J, Annis-Emeott A, Lee PW, et al. Public awareness and use of direct-To-consumer genetic tests: Results from 3 state population-based surveys, 2006. Am J Public Health 2009 Mar; 99(3): 442-445. [doi: 10.2105/AJPH.2007.131631] [Medline: 19106425]
34. Gollust SE, Gordon ES, Zayac C, Griffin G, Christman MF, Pyeritz RE, et al. Motivations and perceptions of early adopters of personalized genomics: Perspectives from research participants. Public Health Genomics 2012; 15(1): 22-30 [FREE Full text] [doi: 10.1159/000327296] [Medline: 21654153]
35. Graves KD, Peshkin BN, Luta G, Tuong W, Schwartz MD. Interest in genetic testing for modest changes in breast cancer risk: Implications for SNP testing. Public Health Genomics 2011; 14(3): 178-189 [FREE Full text] [doi: 10.1159/000324703] [Medline: 21464556]
36. Gray SW, Hornik RC, Schwartz JS, Armstrong K. The impact of risk information exposure on women's beliefs about direct-To-consumer genetic testing for BRCA mutations. Clin Genet 2012 Jan; 81(1): 29-37 [FREE Full text] [doi: 10.1111/j.1399-0004.2011.01797.x] [Medline: 21992449]
37. Hall TO, Renz AD, Snapinn KW, Bowen DJ, Edwards KL. Awareness and uptake of direct-To-consumer genetic testing among cancer cases, their relatives, and controls: The Northwest Cancer Genetics Network. Genet Test Mol Biomarkers 2012 Jul; 16(7): 744-748 [FREE Full text] [doi: 10.1089/gtmb.2011.0235] [Medline: 22731649]
38. Kaphingst KA, McBride CM, Wade C, Alford SH, Brody LC, Baxevanis AD. Consumers' use of web-based information and their decisions about multiplex genetic susceptibility testing. J Med Internet Res 2010; 12(3): E41 [FREE Full text] [doi: 10.2196/jmir.1587] [Medline: 20884465]
39. Kolor K, Duquette D, Zlot A, Foland J, Anderson B, Giles R, et al. Public awareness and use of direct-To-consumer personal genomic tests from four state population-based surveys, and implications for clinical and public health practice. Genet Med 2012 Oct; 14(10): 860-867. [doi: 10.1038/gim.2012.67] [Medline: 22814860]
40. Langford AT, Resnicow K, Roberts JS, Zikmund-Fisher BJ. Racial and ethnic differences in direct-To-consumer genetic tests awareness in HINTS 2007: Sociodemographic and numeracy correlates. J Genet Couns 2012 Jun; 21(3): 440-447. [doi: 10.1007/s10897-011-9478-2] [Medline: 22271378]
41. Leighton JW, Valverde K, Bernhardt BA. The general public's understanding and perception of direct-To-consumer genetic test results. Public Health Genomics 2012; 15(1): 11-21 [FREE Full text] [doi: 10.1159/000327159] [Medline: 21720148]
42. 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 [FREE Full text] [doi: 10.1097/GIM.0b013e3181b22c3a] [Medline: 19606049]
43. McGuire AL, Diaz CM, Wang T, Hilsenbeck SG. Social networkers' attitudes toward direct-To-consumer personal genome testing. Am J Bioeth 2009; 9(6-7): 3-10 [FREE Full text] [doi: 10.1080/15265160902928209] [Medline: 19998099]
44. O'Neill S, White D, Sanderson S, Lipkus I, Bepler G, Bastian L, et al. The feasibility of online genetic testing for lung cancer susceptibility: Uptake of a web-based protocol and decision outcomes. Genet Med 2008 Feb; 10(2): 121-130.
45. Ortiz AP, López M, Flores LT, Soto-Salgado M, Finney Rutten LJ, Serrano-Rodriguez RA, et al. Awareness of direct-To-consumer genetic tests and use of genetic tests among Puerto Rican adults, 2009. Prev Chronic Dis 2011 Sep; 8(5): A110 [FREE Full text] [Medline: 21843413]
46. Paquin RS, Richards AS, Koehly LM, McBride CM. Exploring dispositional tendencies to seek online information about direct-To-consumer genetic testing. Transl Behav Med 2012 Dec; 2(4): 392-400 [FREE Full text] [doi: 10.1007/s13142-012-0159-y] [Medline: 24073142]
47. Perez GK, Cruess DG, Cruess S, Brewer M, Stroop J, Schwartz R, et al. Attitudes toward direct-To-consumer advertisements and online genetic testing among high-risk women participating in a hereditary cancer clinic. J Health Commun 2011 Jul; 16(6): 607-628. [doi: 10.1080/10810730.2011.551993] [Medline: 21432710]
48. Ramakrishnan S, Rollins B, Perri MI. Direct-To-consumer advertising of predictive genetic tests: An examination of consumer attitudes, behavioral intentions and information seeking behavior. J Health & Mass Comm 2011; 3: 1940-1943.
49. Sweeny K, Legg AM. Predictors of interest in direct-To-consumer genetic testing. Psychol Health 2011 Oct; 26(10): 1259-1272. [doi: 10.1080/08870446.2010.514607] [Medline: 21500101]
50. Tercyak KP, Hensley AS, Emmons KM, Lipkus IM, Wilfond BS, McBride CM. Parents' attitudes toward pediatric genetic testing for common disease risk. Pediatrics 2011 May; 127(5): E1288-e1295 [FREE Full text] [doi: 10.1542/peds.2010-0938] [Medline: 21502235]
51. Critchley C, Nicol D, Otlowski M, Chalmers D. Public reaction to direct-To-consumer online genetic tests: Comparing attitudes, trust and intentions across commercial and conventional providers. Public Underst Sci 2015 Aug; 24(6): 731-750.
52. Mai Y, Koromila T, Sagia A, Cooper DN, Vlachopoulos G, Lagoumintzis G, et al. A critical view of the general public's awareness and physicians' opinion of the trends and potential pitfalls of genetic testing in Greece. Personalized Medicine 2011 Sep; 8(5): 551-561. [doi: 10.2217/pme.11.48]
53. Ries NM, Hyde-Lay R, Caulfield T. Willingness to pay for genetic testing: A study of attitudes in a Canadian population. Public Health Genomics 2010; 13(5): 292-300. [doi: 10.1159/000253120] [Medline: 19864872]
54. Sanderson SC, Wardle J. Associations between anticipated reactions to genetic test results and interest in genetic testing: Will self-selection reduce the potential for harm? Genet Test 2008 Mar; 12(1): 59-66. [doi: 10.1089/gte.2007.0047] [Medline: 18318647]
55. Vayena E, Ineichen C, Stoupka E, Hafen E. Playing a part in research? University students' attitudes to direct-To-consumer genomics. Public Health Genomics 2014; 17(3): 158-168 [FREE Full text] [doi: 10.1159/000360257] [Medline: 24777115]
56. Wilde A, Meiser B, Mitchell PB, Hadzi-Pavlovic D, Schofield PR. Community interest in predictive genetic testing for susceptibility to major depressive disorder in a large national sample. Psychol Med 2011 Aug; 41(8): 1605-1613. [doi: 10.1017/S0033291710002394] [Medline: 21159212]
57. Nielsen DE, El-Sohemy A. A randomized trial of genetic information for personalized nutrition. Genes Nutr 2012 Oct; 7(4): 559-566 [FREE Full text] [doi: 10.1007/s12263-012-0290-x] [Medline: 22407352]
58. Savard J, Mooney-Somers J, Newson AJ, Kerridge I. Australians' knowledge and perceptions of direct-To-consumer personal genome testing. Intern Med J 2014 Jan; 44(1): 27-31. [doi: 10.1111/imj.12289] [Medline: 24450520]
59. Cherkas LF, Harris JM, Levinson E, Spector TD, Prainsack B. A survey of UK public interest in internet-based personal genome testing. PLoS One 2010; 5(10): E13473 [FREE Full text] [doi: 10.1371/journal.pone.0013473] [Medline: 20976053]
60. Vermeulen E, Henneman L, van El CG, Cornel MC. Public attitudes towards preventive genomics and personal interest in genetic testing to prevent disease: A survey study. Eur J Public Health 2014 Oct; 24(5): 768-775 [FREE Full text] [doi: 10.1093/eurpub/ckt143] [Medline: 24068545]
61. Rollins BL, Ramakrishnan S, Perri M. Direct-To-consumer advertising of predictive genetic tests: A health belief model based examination of consumer response. Health Mark Q 2014; 31(3): 263-278. [doi: 10.1080/07359683.2014.936295] [Medline: 25120046]
62. Harris A, Kelly SE, Wyatt S. Autobiologies on YouTube: Narratives of Direct-To-Consumer Genetic Testing. New Genet Soc 2014 Mar; 33(1): 60-78. [doi: 10.1080/14636778.2014.884456] [Medline: 24772003]
63. Nusbaum R, Leventhal K, Hooker GW, Peshkin BN, Butrick M, Salehizadeh Y, et al. Translational Genomic Research: Protocol Development and Initial Outcomes following SNP Testing for Colon Cancer Risk. Transl Behav Med 2013 Mar 1; 3(1): 17-29 [FREE Full text] [doi: 10.1007/s13142-012-0149-0] [Medline: 23565131]
64. Vernez SL, Salari K, Ormond KE, Lee SS. Personal genome testing in medical education: Student experiences with genotyping in the classroom. Genome Med 2013; 5(3): 24 [FREE Full text] [doi: 10.1186/gm428] [Medline: 23510111]
65. Wasson K, Sanders TN, Hogan NS, Cherny S, Helzlsouer KJ. Primary care patients' views and decisions about, experience of and reactions to direct-To-consumer genetic testing: A longitudinal study. J Community Genet 2013 Oct; 4(4): 495-505 [FREE Full text] [doi: 10.1007/s12687-013-0156-y] [Medline: 23832288]
66. Wasson K, Cherny S, Sanders TN, Hogan NS, Helzlsouer KJ. Who are you going to call? Primary care patients' disclosure decisions regarding direct-To-consumer genetic testing. Narrat Inq Bioeth 2014; 4(1): 53-68. [doi: 10.1353/nib.2014.0026] [Medline: 24748260]
67. McGowan ML, Fishman JR, Lambrix MA. Personal genomics and individual identities: Motivations and moral imperatives of early users. New Genet Soc 2010 Sep 1; 29(3): 261-290 [FREE Full text] [doi: 10.1080/14636778.2010.507485] [Medline: 21076647]
68. Su Y, Howard HC, Borry P. Users' motivations to purchase direct-To-consumer genome-wide testing: An exploratory study of personal stories. J Community Genet 2011 Sep; 2(3): 135-146 [FREE Full text] [doi: 10.1007/s12687-011-0048-y] [Medline: 22109820]
69. Su Y, Borry P, Otte IC, Howard HC. "It's our DNA, we deserve the right to test!" A content analysis of a petition for the right to access direct-To-consumer genetic testing. Personalized Medicine 2013 Sep; 10(7): 729-739. [doi: 10.2217/pme.13.69]
70. Gordon ES, Griffin G, Wawak L, Pang H, Gollust SE, Bernhardt BA. "It's not like judgment day": Public understanding of and reactions to personalized genomic risk information. J Genet Couns 2012 Jun; 21(3): 423-432 [FREE Full text] [doi: 10.1007/s10897-011-9476-4] [Medline: 22180182]
71. Vayena E, Gourna E, Streuli J, Hafen E, Prainsack B. Experiences of early users of direct-To-consumer genomics in Switzerland: An exploratory study. Public Health Genomics 2012; 15(6): 352-362. [doi: 10.1159/000343792] [Medline: 23154382]
72. Austin SEA, Hegele RA. Clinical implications of direct-To-consumer genetic testing for cardiovascular disease risk. Can J Cardiol 2011; 27(6): 682-684. [doi: 10.1016/j.cjca.2011.02.006] [Medline: 21652171]
73. Brownstein CA, Margulies DM, Manzi SF. Misinterpretation of TPMT by a DTC genetic testing company. Clin Pharmacol Ther 2014 Jun; 95(6): 598-600. [doi: 10.1038/clpt.2014.60] [Medline: 24714787]
74. Corpas M. A family experience of personal genomics. J Genet Couns 2012 Jun; 21(3): 386-391. [doi: 10.1007/s10897-011-9473-7] [Medline: 22223063]
75. Dohany L, Gustafson S, Ducaine W, Zakalik D. Psychological distress with direct-To-consumer genetic testing: A case report of an unexpected BRCA positive test result. J Genet Couns 2012 Jun; 21(3): 399-401. [doi: 10.1007/s10897-011-9475-5] [Medline: 22271377]
76. Messner DA. Informed Choice in Direct-To-Consumer Genetic Testing for Alzheimer and Other Diseases: Lessons from Two Cases. New Genet Soc 2011; 30(1): 59-72 [FREE Full text] [doi: 10.1080/14636778.2011.552300] [Medline: 21603253]
77. Roberts ME, Riegert-Johnson DL, Thomas BC. Self diagnosis of Lynch syndrome using direct to consumer genetic testing: A case study. J Genet Couns 2011 Aug; 20(4): 327-329. [doi: 10.1007/s10897-011-9356-y] [Medline: 21448764]
78. Saunders KH, Nazareth S, Pressman PI. Case report: BRCA in the Ashkenazi population: Are current testing guidelines too exclusive? Hered Cancer Clin Pract 2011; 9(1): 3 [FREE Full text] [doi: 10.1186/1897-4287-9-3] [Medline: 21711529]
79. Sturm AC, Manickam K. Direct-To-consumer personal genomic testing: A case study and practical recommendations for "genomic counseling". J Genet Couns 2012 Jun; 21(3): 402-412. [doi: 10.1007/s10897-012-9489-7] [Medline: 22302621]
80. Bansback N, Sizto S, Guh D, Anis AH. The effect of direct-To-consumer genetic tests on anticipated affect and health-seeking behaviors: A pilot survey. Genet Test Mol Biomarkers 2012 Oct; 16(10): 1165-1171. [doi: 10.1089/gtmb.2012.0074] [Medline: 22931244]
81. Bloss CS, Schork NJ, Topol EJ. Effect of direct-To-consumer genomewide profiling to assess disease risk. N Engl J Med 2011 Feb 10; 364(6): 524-534 [FREE Full text] [doi: 10.1056/NEJMoa1011893] [Medline: 21226570]
82. Bloss CS, Wineinger NE, Darst BF, Schork NJ, Topol EJ. Impact of direct-To-consumer genomic testing at long term follow-up. J Med Genet 2013 Jun; 50(6): 393-400. [doi: 10.1136/jmedgenet-2012-101207] [Medline: 23559530]
83. Bloss CS, Schork NJ, Topol EJ. Direct-To-consumer pharmacogenomic testing is associated with increased physician utilisation. J Med Genet 2014 Feb; 51(2): 83-89. [doi: 10.1136/jmedgenet-2013-101909] [Medline: 24343916]
84. Dar-Nimrod I, Zuckerman M, Duberstein PR. The effects of learning about one's own genetic susceptibility to alcoholism: A randomized experiment. Genet Med 2013 Feb; 15(2): 132-138. [doi: 10.1038/gim.2012.111] [Medline: 22935722]
85. Darst BF, Madlensky L, Schork NJ, Topol EJ, Bloss CS. Perceptions of genetic counseling services in direct-To-consumer personal genomic testing. Clin Genet 2013 Oct; 84(4): 335-339. [doi: 10.1111/cge.12166] [Medline: 23590221]
86. Darst BF, Madlensky L, Schork NJ, Topol EJ, Bloss CS. Characteristics of genomic test consumers who spontaneously share results with their health care provider. Health Commun 2014; 29(1): 105-108 [FREE Full text] [doi: 10.1080/10410236.2012.717216] [Medline: 23384116]
87. Haga SB, Barry WT, Mills R, Svetkey L, Suchindran S, Willard HF, et al. Impact of delivery models on understanding genomic risk for type 2 diabetes. Public Health Genomics 2014; 17(2): 95-104 [FREE Full text] [doi: 10.1159/000358413] [Medline: 24577154]
88. James KM, Cowl CT, Tilburt JC, Sinicrope PS, Robinson ME, Frimannsdottir KR, et al. Impact of direct-To-consumer predictive genomic testing on risk perception and worry among patients receiving routine care in a preventive health clinic. Mayo Clin Proc 2011 Oct; 86(10): 933-940 [FREE Full text] [doi: 10.4065/mcp.2011.0190] [Medline: 21964170]
89. Kaphingst KA, McBride CM, Wade C, Alford SH, Reid R, Larson E, et al. Patients' understanding of and responses to multiplex genetic susceptibility test results. Genet Med 2012 Jul; 14(7): 681-687 [FREE Full text] [doi: 10.1038/gim.2012.22] [Medline: 22481132]
90. Francke U, Dijamco C, Kiefer A, Eriksson N, Moiseff B, Tung J, et al. Dealing with the unexpected: Consumer responses to direct-Access BRCA mutation testing. PeerJ 2013 Feb: 1-24. [doi: 10.7717/peerj.8]
91. Kaufman DJ, Bollinger JM, Dvoskin RL, Scott JA. Risky business: Risk perception and the use of medical services among customers of DTC personal genetic testing. J Genet Couns 2012 Jun; 21(3): 413-422. [doi: 10.1007/s10897-012-9483-0] [Medline: 22278220]
92. Reid RJ, McBride CM, Alford SH, Price C, Baxevanis AD, Brody LC, et al. Association between health-service use and multiplex genetic testing. Genet Med 2012 Oct; 14(10): 852-859 [FREE Full text] [doi: 10.1038/gim.2012.52] [Medline: 22595941]
93. Boeldt DL, Schork NJ, Topol EJ, Bloss CS. Influence of individual differences in disease perception on consumer response to direct-To-consumer genomic testing. Clin Genet 2015 Mar; 87(3): 225-232. [doi: 10.1111/cge.12419] [Medline: 24798746]
94. Egglestone C, Morris A, O'Brien A. Effect of direct-To-consumer genetic tests on health behaviour and anxiety: A survey of consumers and potential consumers. J Genet Couns 2013 Oct; 22(5): 565-575. [doi: 10.1007/s10897-013-9582-6] [Medline: 23547022]
95. Nielsen DE, Shih S, El-Sohemy A. Perceptions of genetic testing for personalized nutrition: A randomized trial of DNA-based dietary advice. J Nutrigenet Nutrigenomics 2014; 7(2): 94-104. [doi: 10.1159/000365508] [Medline: 25170902]
96. Weir M, Morin K, Ries N, Castle D. Canadian health care professionals' knowledge, attitudes and perceptions of nutritional genomics. Br J Nutr 2010 Oct; 104(8): 1112-1119. [doi: 10.1017/S0007114510002035] [Medline: 20550743]
97. McGowan ML, Fishman JR, Settersten RA, Lambrix MA, Juengst ET. Gatekeepers or intermediaries? The role of clinicians in commercial genomic testing. PLoS One 2014; 9(9): E108484 [FREE Full text] [doi: 10.1371/journal.pone.0108484] [Medline: 25259512]
98. Bernhardt BA, Zayac C, Gordon ES, Wawak L, Pyeritz RE, Gollust SE. Incorporating direct-To-consumer genomic information into patient care: Attitudes and experiences of primary care physicians. Per Med 2012 Sep 1; 9(7): 683-692 [FREE Full text] [doi: 10.2217/pme.12.80] [Medline: 23795206]
99. Giovanni MA, Fickie MR, Lehmann LS, Green RC, Meckley LM, Veenstra D, et al. Health-care referrals from direct-To-consumer genetic testing. Genet Test Mol Biomarkers 2010 Dec; 14(6): 817-819 [FREE Full text] [doi: 10.1089/gtmb.2010.0051] [Medline: 20979566]
100. Haga SB, Carrig MM, O'Daniel JM, Orlando LA, Killeya-Jones LA, Ginsburg GS, et al. Genomic risk profiling: Attitudes and use in personal and clinical care of primary care physicians who offer risk profiling. J Gen Intern Med 2011 Aug; 26(8): 834-840 [FREE Full text] [doi: 10.1007/s11606-011-1651-7] [Medline: 21311998]
101. Hock KT, Christensen KD, Yashar BM, Roberts JS, Gollust SE, Uhlmann WR. Direct-To-consumer genetic testing: An assessment of genetic counselors' knowledge and beliefs. Genet Med 2011 Apr; 13(4): 325-332 [FREE Full text] [doi: 10.1097/GIM.0b013e3182011636] [Medline: 21233722]
102. Mainous A, Johnson S, Chirina S, Baker R. Academic family physicians' perception of genetic testing and integration into practice: A CERA study. Fam Med 2013 Apr; 45(4): 257-262. [Medline: 23553089]
103. Noss R, Mills R, Callanan N. The incorporation of predictive genomic testing into genetic counseling programs. J Genet Couns 2014 Aug; 23(4): 671-678. [doi: 10.1007/s10897-014-9699-2] [Medline: 24584888]
104. Ormond KE, Hudgins L, Ladd JM, Magnus DM, Greely HT, Cho MK. Medical and graduate students' attitudes toward personal genomics. Genet Med 2011 May; 13(5): 400-408. [doi: 10.1097/GIM.0b013e31820562f6] [Medline: 21270640]
105. Powell KP, Cogswell WA, Christianson CA, Dave G, Verma A, Eubanks S, et al. Primary care physicians' awareness, experience and opinions of direct-To-consumer genetic testing. J Genet Couns 2012 Feb; 21(1): 113-126. [doi: 10.1007/s10897-011-9390-9] [Medline: 21769569]
106. Powell KP, Christianson CA, Cogswell WA, Dave G, Verma A, Eubanks S, et al. Educational needs of primary care physicians regarding direct-To-consumer genetic testing. J Genet Couns 2012 Jun; 21(3): 469-478. [doi: 10.1007/s10897-011-9471-9] [Medline: 22207397]
107. Salm M, Abbate K, Appelbaum P, Ottman R, Chung W, Marder K, et al. Use of genetic tests among neurologists and psychiatrists: Knowledge, attitudes, behaviors, and needs for training. J Genet Couns 2014 Apr; 23(2): 156-163 [FREE Full text] [doi: 10.1007/s10897-013-9624-0] [Medline: 23793969]
108. Brierley KL, Bonadies DC, Moyer A, Matloff ET. "Would you test your children without their consent?" and other sticky dilemmas in the field of cancer genetic testing. Fam Cancer 2014 Sep; 13(3): 345-350. [doi: 10.1007/s10689-014-9723-6] [Medline: 24804937]
109. Brett GR, Metcalfe SA, Amor DJ, Halliday JL. An exploration of genetic health professionals' experience with direct-To-consumer genetic testing in their clinical practice. Eur J Hum Genet 2012 Aug; 20(8): 825-830 [FREE Full text] [doi: 10.1038/ejhg.2012.13] [Medline: 22317975]
110. Howard HC, Borry P. Survey of European clinical geneticists on awareness, experiences and attitudes towards direct-To-consumer genetic testing. Genome Med 2013; 5(5): 45 [FREE Full text] [doi: 10.1186/gm449] [Medline: 23697740]
111. Ohata T, Tsuchiya A, Watanabe M, Sumida T, Takada F. Physicians' opinion for 'new' genetic testing in Japan. J Hum Genet 2009 Apr; 54(4): 203-208. [doi: 10.1038/jhg.2009.11] [Medline: 19300458]
112. Ram S, Russell B, Gubb M, Taylor R, Butler C, Khan I, et al. General practitioner attitudes to direct-To-consumer genetic testing in New Zealand. N Z Med J 2012 Oct 26; 125(1364): 14-26. [Medline: 23242394]
113. Arribas-Ayllon M, Sarangi S, Clarke A. Promissory accounts of personalisation in the commercialisation of genomic knowledge. Commun Med 2011; 8(1): 53-66. [Medline: 22616356]
114. Hennen L, Sauter A, Van Den Cruyce E. Direct to consumer genetic testing: Insights from an internet scan. New Genet Soc 2010 Jun 21; 29(2): 167-186. [doi: 10.1080/14636778.2010.484232]
115. 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]
116. Liu Y, Pearson YE. Direct-To-Consumer Marketing of Predictive Medical Genetic Tests: Assessment of Current Practices and Policy Recommendations. J Public Policy Mark 2008; 27(2): 131-148.
117. Sterling R. The on-line promotion and sale of nutrigenomic services. Genet Med 2008 Nov; 10(11): 784-796. [doi: 10.1097/GIM.0b013e31818c0441] [Medline: 18941418]
118. Borry P, Howard HC, Sénécal K, Avard D. Health-related direct-To-consumer genetic testing: A review of companies' policies with regard to genetic testing in minors. Fam Cancer 2010 Mar; 9(1): 51-59. [doi: 10.1007/s10689-009-9253-9] [Medline: 19488835]
119. Howard HC, Avard D, Borry P. Are the kids really all right? Direct-To-consumer genetic testing in children: Are company policies clashing with professional norms? Eur J Hum Genet 2011 Nov; 19(11): 1122-1126 [FREE Full text] [doi: 10.1038/ejhg.2011.94] [Medline: 21629297]
120. Kechagia S, Mai Y, Vidalis T, Patrinos GP, Vayena E. Personal genomics in Greece: An overview of available direct-To-consumer genomic services and the relevant legal framework. Public Health Genomics 2014; 17(5-6): 299-305. [doi: 10.1159/000366175] [Medline: 25278084]
121. Lachance CR, Erby LAH, Ford BM, Allen VC, Kaphingst KA. Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers. Genet Med 2010 May; 12(5): 304-312 [FREE Full text] [doi: 10.1097/GIM.0b013e3181dbd8b2] [Medline: 20386454]
122. Lewis NP, Treise D, Hsu SI, Allen WL, Kang H. DTC genetic testing companies fail transparency prescriptions. New Genetics and Society 2011 Dec; 30(4): 291-307. [doi: 10.1080/14636778.2011.600434]
123. 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.
124. Covolo L, Rubinelli S, Orizio G, Gelatti U. Misuse (and abuse?) of the Concept of Empowerment.The Case of Online Offer of Predictive Direct-To-consumer Genetic Tests. J Public Health Res 2012 Feb 17; 1(1): 7-10 [FREE Full text] [doi: 10.4081/jphr.2012.e3] [Medline: 25170440]
125. Gollust SE, Wilfond BS, Hull SC. Direct-To-consumer sales of genetic services on the Internet. Genet Med 2003; 5(4): 332-337. [doi: 10.1097/01.GIM.0000076972.83711.48] [Medline: 12865763]
126. Harris A, Kelly SE, Wyatt S. Counseling customers: Emerging roles for genetic counselors in the direct-To-consumer genetic testing market. J Genet Couns 2013 Apr; 22(2): 277-288. [doi: 10.1007/s10897-012-9548-0] [Medline: 23093333]
127. Singleton A, Erby LH, Foisie KV, Kaphingst KA. Informed choice in direct-To-consumer genetic testing (DTCGT) websites: A content analysis of benefits, risks, and limitations. J Genet Couns 2012 Jun; 21(3): 433-439 [FREE Full text] [doi: 10.1007/s10897-011-9474-6] [Medline: 22194036]
128. Einsiedel EF, Geransar R. Framing genetic risk: Trust and credibility markers in online direct-To-consumer advertising for genetic testing. New Genetics and Society 2009 Dec; 28(4): 339-362. [doi: 10.1080/14636770903314509]
129. Kutz G. United States Government Accountability Office. 2006. Nutrigenetic Testing: Tests Purchased from Four Web Sites Mislead Consumers URL: Http://www.gao.gov/new.items/d06977t.pdf [accessed 2015-02-12] [WebCite Cache ID 6WI1Hs3Tg]
130. Adams SD, Evans JP, Aylsworth AS. Direct-To-consumer genomic testing offers little clinical utility but appears to cause minimal harm. N C Med J 2013; 74(6): 494-498 [FREE Full text] [Medline: 24316774]
131. Bloss CS, Topol EJ, Schork NJ. Association of direct-To-consumer genome-wide disease risk estimates and self-reported disease. Genet Epidemiol 2012 Jan; 36(1): 66-70 [FREE Full text] [doi: 10.1002/gepi.20664] [Medline: 22127769]
132. Buitendijk GHS, Amin N, Hofman A, van Duijn CM, Vingerling JR, Klaver CCW. Direct-To-consumer personal genome testing for age-related macular degeneration. Invest Ophthalmol Vis Sci 2014 Oct; 55(10): 6167-6174. [doi: 10.1167/iovs.14-15142] [Medline: 25146986]
133. Imai K, Kricka LJ, Fortina P. Concordance study of 3 direct-To-consumer genetic-Testing services. Clin Chem 2011 Mar; 57(3): 518-521 [FREE Full text] [doi: 10.1373/clinchem.2010.158220] [Medline: 21159896]
134. Johnson AD, Bhimavarapu A, Benjamin EJ, Fox C, Levy D, Jarvik GP, et al. CLIA-Tested genetic variants on commercial SNP arrays: Potential for incidental findings in genome-wide association studies. Genet Med 2010 Jun; 12(6): 355-363 [FREE Full text] [doi: 10.1097/GIM.0b013e3181e1e2a9] [Medline: 20556870]
135. Kalf RRJ, Mihaescu R, Kundu S, de KP, Green RC, Janssens CJW. Variations in predicted risks in personal genome testing for common complex diseases. Genet Med 2014 Jan; 16(1): 85-91 [FREE Full text] [doi: 10.1038/gim.2013.80] [Medline: 23807614]
136. Kido T, Kawashima M, Nishino S, Swan M, Kamatani N, Butte AJ. Systematic evaluation of personal genome services for Japanese individuals. J Hum Genet 2013 Nov; 58(11): 734-741. [doi: 10.1038/jhg.2013.96] [Medline: 24067293]
137. Mihaescu R, van HM, Sijbrands EJG, Uitterlinden AG, Witteman JCM, Hofman A, et al. Evaluation of risk prediction updates from commercial genome-wide scans. Genet Med 2009 Aug; 11(8): 588-594. [doi: 10.1097/GIM.0b013e3181b13a4f] [Medline: 19636253]
138. Ng PC, Murray SS, Levy S, Venter JC. An agenda for personalized medicine. Nature 2009 Oct 8; 461(7265): 724-746. [doi: 10.1038/461724a] [Medline: 19812653]
139. Palomaki GE, Melillo S, Marrone M, Douglas MP. Use of genomic panels to determine risk of developing type 2 diabetes in the general population: A targeted evidence-based review. Genet Med 2013 Aug; 15(8): 600-611. [doi: 10.1038/gim.2013.8] [Medline: 23492876]
140. Swan M. Multigenic condition risk assessment in direct-To-consumer genomic services. Genet Med 2010 May; 12(5): 279-288. [doi: 10.1097/GIM.0b013e3181d5f73b] [Medline: 20474084]
141. Orizio G, Merla A, Schulz PJ, Gelatti U. Quality of online pharmacies and websites selling prescription drugs: A systematic review. J Med Internet Res 2011; 13(3): E74 [FREE Full text] [doi: 10.2196/jmir.1795] [Medline: 21965220]
142. Covolo L, Capelli M, Ceretti E, Feretti D, Caimi L, Gelatti U. Nutritional supplements for diabetes sold on the internet: Business or health promotion? BMC Public Health 2013 Aug 26; 13: 777.
143. Human Genetics Commission. 2010. A common framework of principles for direct-To-consumer genetic testing services URL: Http://osp.od.nih.gov/sites/default/files/resources/Human-Genetics-Commission-0.pdf [WebCite Cache ID 6WI1Mhpal]
144. Howard HC, Borry P. Is there a doctor in the house? : The presence of physicians in the direct-To-consumer genetic testing context. J Community Genet 2012 Apr; 3(2): 105-112 [FREE Full text] [doi: 10.1007/s12687-011-0062-0] [Medline: 22109907]
145. Draugalis JR, Coons SJ, Plaza CM. Best practices for survey research reports: A synopsis for authors and reviewers. Am J Pharm Educ 2008 Feb 15; 72(1): 11 [FREE Full text] [Medline: 18322573]
146. Janssens CJ, van Duijn CM. An epidemiological perspective on the future of direct-To-consumer personal genome testing. Investig Genet 2010; 1(1): 10 [FREE Full text] [doi: 10.1186/2041-2223-1-10] [Medline: 21092344]
147. Global Industry Analysts, Inc. 2013. Direct-To-Consumer (DTC) Genetic Testing: A Global Strategic Business Report URL: Http://www.prweb.com/releases/DTC-genetic-Testing/direct-To-consumer-Tests/prweb9780295.htm [accessed 2015-02-12] [WebCite Cache ID 6WI1RVqFp]