Direct-to-consumer genomic testing from the perspective of the health professional: a systematic review of the literature
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Baars MJH, Henneman L, ten Kate LP (2005) Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem. Genet Med 7(9):605–610
Bloss CS, Schork NJ, Topol EJ (2011) Effect of direct-to-consumer genomewide profiling to assess disease risk. N Engl J Med 364(6):524–534
Borry P (2010) Statement of the ESHG on direct-to-consumer genetic testing for health-related purposes. Eur J Hum Genet 18(12):1271–1273
Borry P, Henneman L, Lakeman P, ten Kate LP, Cornel MC, Howard HC (2011) Preconceptional genetic carrier testing and the commercial offer directly-to-consumers. Hum Reprod 26(5):972–977. doi: 10.1093/humrep/der042
Brett GR, Metcalfe SA, Amor DJ, Halliday JL (2012) An exploration of genetic health professionals’ experience with direct-to-consumer genetic testing in their clinical practice. European Journal of Human Genetics advance on line publication. doi: 10.1038/ehjg.2012.13
Burke S, Kirk M (2006) Genetics education in the nursing profession: literature review. J Adv Nurs 54(2):228–237. doi: 10.1111/j.1365-2648.2006.03805.x
Burton H (2011) Genetics and mainstream medicine. Public Health Genetics Foundation. ISBN 978-1-907198-07-6
Caulfield T, Ries NM, Ray PN, Shuman C, Wilson B (2010) Direct-to-consumer genetic testing: good, bad or benign? Clin Genet 77:101–105
Centre for Reviews and Dissemination (2008) Systematic reviews. CRD, University of York, York
Einsiedel EF, Geransar R (2009) Framing genetic risk: trust and credibility markers in online direct-to-consumer advertising for genetic testing. New Genet Soc 28(4):339–362
Giovanni MA, Fickie MR, Lehmann LS, Green RC, Meckley LM, Veenstra D, Murray MF (2010) Health-care referrals from direct-to-consumer genetic testing. Genet Test Mol Biomarkers 14(6):817–819
Gollust SE, Gordon ES, Zayac C, Griffin G, Christman MF, Pyeritz RE, Wawak L, Bernhardt B (2011) Motivations and perceptions of early adopters of personalized genomics: perspectives from research participants. Public Health Genomics. doi: 10.1159/000327296
Gray SW, Hornik RC, Schwartz JS, Armstrong K (2011) The impact of risk information exposure on women’s beliefs about direct-to-consumer genetic testing for BRCA mutations. Clin Genet 81(1):29–37. doi: 10.1111/j.1399-0004.2011.01797.x
Guttmacher AE, Porteous ME, McInerney JD (2007) Educating health-care professionals about genetics and genomics. Nat Rev Genet 8(2):151–157
Haga S, Carrig MM, O’Daniel JM, Orlando LA, Killeya-Jones LA, Ginsburg GS, Cho A (2011) Genomic risk profiling: attitudes and use in personal and clinical care of primary care physicians who offer risk profiling. Journal of General Internal Medicine 26(8):834–840
Heald B, Edelman E, Eng C (2012) Prospective comparison of family medical history with personal genome screening for risk assessment of common cancers. Eur J Hum Genet 20(5):547–551
Hennen L, Sauter A, Van Den Cruyce E (2010) Direct to consumer genetic testing: insights from an Internet scan. New Genet Soc 29(2):167–186
Hock KT, Christensen KD, Yashar BM, Roberts JS, Gollust SE, Uhlmann WR (2011) Direct-to-consumer genetic testing: an assessment of genetic counselors’ knowledge and beliefs. Genet Med 13(4):325–332
Houwink E, van Luijk S, Henneman L, van der Vleuten C, Jan Dinant G, Cornel M (2011) Genetic educational needs and the role of genetics in primary care: a focus group study with multiple perspectives. BMC Fam Pract 12(1):5
Howard HC, Borry P (2008) Direct-to-consumer genetic testing: more questions than benefits? Personalized Medicine 5(4):317–320
Hunter DJ, Khoury MJ, Drazen JM (2008) Letting the genome out of the bottle—will we get our wish? N Engl J Med 358(2):105–107
Imai K, Kricka LJ, Fortina P (2011) Concordance study of 3 direct-to-consumer genetic-testing services. Clin Chem 57(3):518–521. doi: 10.1373/clinchem.2010.158220
Khoury MJ, McBride CM, Schully SD, Ioannidis JPA, Feero WG, Janssens ACJW, Gwinn M, Simons-Morton DG, Bernhardt JM, Cargill M, Chanock SJ, Church GM, Coates RJ, Collins FS, Croyle RT, Davis BR, Downing GJ, DuRoss A, Friedman S, Gail MH, Ginsburg GS, Green RC, Greene MH, Greenland P, Gulcher JR, Hsu A, Hudson KL, Kardia SLR, Kimmel PL, Lauer MS, Miller AM, Offit K, Ransohoff DF, Roberts JS, Rasooly RS, Stefansson K, Terry SF, Teutsch SM, Trepanier A, Wanke KL, Witte JS, Xu J (2009) The Scientific Foundation for Personal Genomics: Recommendations from a National Institutes of Health-Centers for Disease Control and Prevention Multidisciplinary Workshop. Genet Med 11 (8):559–567 510.1097/GIM.1090b1013e3181b1013a1096c
Kmet LM, Lee RC, Cook LS (2004) Standard quality assessment criteria for evaluating primary research papers from a variety of fields. Alberta Heritage Foundation for Medical Research. http://www.ihe.ca/documents/HTA-FR13.pdf . Accessed 8 September 2008
Kolor K, Liu T, St. Pierre J, Khoury MJ (2009) Health care provider and consumer awareness, perceptions, and use of direct-to-consumer personal genomic tests, United States, 2008. Genet Med 11(8):595
Kroese M (2012) The challenges posed by direct-to-consumer genetic tests. Public Health Genomics Foundation. http://www.phgfoundation.org/news/12372 . Accessed 4 September 2012
Lachance CR, Herby LAH, ford BM, Allen VC, Kaphingst KA (2010) Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers. Genet Med 12(5):304–312
Loud JT (2010) Direct-to-consumer genetic and genomic testing: preparing nurse practitioners for genomic healthcare. The Journal for Nurse Practitioners 6(8):585–594
Mai Y, Koromila T, Sagia A, Cooper DN, Vlachopoulos G, Lagoumintzis G, Kollia P, Poulas K, Stathakopoulos V, Patrinos GP (2011) 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 8(5):551–561. doi: 10.2217/pme.11.48
McGuire AL, Burke W (2008) An unwelcome side effect of direct-to-consumer personal genome testing. Raiding the medical commons Journal of the American Medical Association 300(22):2669–2671
McGuire AL, Diaz CM, Wang T, Hilsenbeck SG (2009) Social networkers’ attitudes toward direct-to-consumer personal genome testing. Am J Bioeth 9(6–7):3–10
Morse JM, Field PA (1996) Nursing research. The application of qualitative approaches, 2nd edn. Chapman and Hall, London
Mouchawar J, Hensley-Alford S, Laurion S, Ellis J, Kulchak-Rahm A, Finucane M, Meenan R, Axell L, Pollack R, Ritzwoller DP (2005) Impact of direct-to-consumer advertising for hereditary breast cancer testing on genetic services at a managed care organization: a naturally-occurring experiment. Genet Med 7(3):191–197
Myers MF, Chang M-H, Jorgensen C, Whitworth W, Kassim S, Litch JA, Armstrong L, Bernhardt B, Faucett WA, Irwin D, Mouchawar J, Bradley LA (2006) Genetic testing for susceptibility to breast and ovarian cancer: evaluating the impact of a direct-to-consumer marketing campaign on physicians’ knowledge and practices. Genet Med 8(6):361–370
National Human Genome Research Institute (2011) A catalog of published genome-wide association studies. National Human Genome Research Institute. http://www.genome.gov/26525384 . Accessed 8 September 2011
Ohata T, Tsuchiya A, Watanabe M, Sumida T, Takada F (2009) Physicians’ opinion for 'new' genetic testing in Japan. J Hum Genet 54:203–208
Perez GK, Cruess DG, Cruess S, Brewer M, Stroop J, Schwartz R, Greenstein R (2011) Attitudes toward direct-to-consumer advertisements and online genetic testing among high-risk women participating in a hereditary cancer clinic. J Heal Commun 0:1–22
Polit DF, Beck CT (2006) Essentials of nursing research, 6th edn. Lippincott Williams and Wilkins, Philadelphia
Powell K, Christianson C, Cogswell W, Dave G, Verma A, Eubanks S, Henrich V (2012) Educational needs of primary care physicians regarding direct-to-consumer genetic testing. J Genet Couns 21(3):469–478. doi: 10.1007/s10897-011-9471-9
Powell KP, Cogswell WA, Christianson CA, Dave G, Verma A, Eubanks S, Henrich VC (2011) Primary Care Physicians’ Awareness, Experience and Opinions of Direct-to-Consumer Genetic Testing. J Genet Couns 21:113-26
Reid RJ, McBride CM, Alford SH, Price C, Baxevanis AD, Brody LC, Larson EB (2012) Association between health-service use and multiplex genetic testing. Genet Med 158A:2463-72
Tamir S (2010) Direct-to-consumer genetic testing: ethical–legal perspectives and practical considerations. Medical Law Review 18:213–238
Thrush SA, McCaffrey R (2010) Direct-to-consumer genetic testing: what the nurse practitioner should know. The Journal for Nurse Practitioners 4:269–273
Vashlishan Murray AB, Carson MJ, Morris CA, Beckwick J (2010) Illusions of scientific legitimacy: misrepresented science in the direct-to-consumer genetic-testing marketplace. Trends Genet 26(11):459–461
Visscher PM, Brown MA, McCarthy MI, Yang J (2012) Five years of GWAS discovery. Am J Hum Genet 90(1):7–24
Wade C, Wilfond BS (2006) Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests. Am J Med Genet Part C (Seminars in Medical Genetics) 142C:284–292
Wilde A, Meiser B, Mitchell PB, Hadzi-Pavlovic D, Schofield PR (2011) Community interest in predictive genetic testing for susceptibility to major depressive disorder in a large national sample. Psychol Med 41(8):1605–1614
WONCA Europe (2002) The European Definition of General Practice/Family Medicine. http://www.woncaeurope.org/Web%20documents/European%20Definition%20of%20family%20medicine/Definition%20EURACTshort%20version.pdf . Accessed 1 November 2011