Explaining, not just predicting, drives interest in personal genomics

Genome Medicine

Volumn 7, Issue 1, 2015, Pages

  Meisel, Susanne F ^a   Carere, Deanna Alexis ^b,c   Wardle, Jane ^a   Kalia, Sarah S ^d   Moreno, Tanya A ^e   Mountain, Joanna L ^f   Roberts, J Scott ^g   Green, Robert C ^b,h,i  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b BRIGHAM AND WOMEN S HOSPITAL   (United States)

^c HARVARD SCHOOL OF PUBLIC HEALTH   (United States)

^d MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^e Millennium Health   (United States)

^f 23andMe Inc ^*  (United States)

^g UNIVERSITY OF MICHIGAN SCHOOL OF PUBLIC HEALTH   (United States)

^h HARVARD MEDICAL SCHOOL   (United States)

ⁱ LABORATORY FOR MOLECULAR MEDICINE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CONSUMER ATTITUDE; FEMALE; GENETIC MARKER; GENETIC RISK; GENETIC SCREENING; HEART DISEASE; HUMAN; MALE; MEDICAL HISTORY; MEDICAL INFORMATION; PERSONAL GENOMICS TESTING; PRIORITY JOURNAL; PROSPECTIVE STUDY; RISK BENEFIT ANALYSIS; ULCERATIVE COLITIS; YOUNG ADULT;

EID: 84938828492     PISSN: None     EISSN: 1756994X     Source Type: Journal    
DOI: 10.1186/s13073-015-0188-5     Document Type: Article

References (27)

1. Frueh FW, Greely HT, Green RC, Hogarth S, Siegel S. The future of direct-to-consumer clinical genetic tests. Nat Rev Genet. 2011;12:511-5.
2. Evans JP, Green RC. Direct to consumer genetic testing: avoiding a culture war. Genet Med. 2009;11:568-9.
3. Caulfield T, McGuire AL. Direct-to-consumer genetic testing: perceptions, problems, and policy responses. Annu Rev Med. 2012;63:23-33.
4. Evans JP, Meslin EM, Marteau TM, Genomics CT. Deflating the genomic bubble. Science. 2011;331:861-2.
5. Roberts JS, Ostergren J. Direct-to-consumer genetic testing and personal genomics services: a review of recent empirical studies. Curr Genet Med Rep. 2013;1:182-200.
6. Khoury MJ, McBride CM, Schully SD, Ioannidis JP, Feero WG, Janssens AC, et al. The scientific foundation for personal genomics: recommendations from a National Institutes of Health-Centers for Disease Control and Prevention multidisciplinary workshop. Genet Med. 2009;11:1-9.
7. Collins FS. The Human Genome Project and the future of medicine. Ann N Y Acad Sci. 1999;882:42-55. discussion 56-65.
8. Green RC, Farahany NA. Regulation: the FDA is overcautious on consumer genomics. Nature. 2014;505:286-7.
9. Bloss CS, Schork NJ, Topol EJ. Effect of direct-to-consumer genomewide profiling to assess disease risk. N Engl J Med. 2011;364:524-34.
10. 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;21:413-22.
11. McGowan ML, Fishman JR, Lambrix MA. Personal genomics and individual identities: motivations and moral imperatives of early users. New Genet Soc. 2010;29:261-90.
12. 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;2:135-46.
13. Meisel SF, Wardle J. Responses to FTO genetic test feedback for obesity in a sample of overweight adults: a qualitative analysis. Genes Nutr. 2014;9:374.
14. Meisel SF, Wardle J. 'Battling my biology': psychological effects of genetic testing for risk of weight gain. J Genet Couns. 2014;23:179-86.
15. Carere DA, Couper MP, Crawford SD, Kalia SS, Duggan JR, Moreno TA, et al. Design, methods, and participant characteristics of the Impact of Personal Genomics (PGen) Study, a prospective cohort study of direct-to-consumer personal genomic testing customers. Genome Med. 2014;6:96.
16. 23andMe. Available at: https://www.23andme.com/ .
17. Pathway Genomics. Available at: http://www.pathway.com .
18. Lehmann LS, Kaufman DJ, Sharp RR, Moreno TA, Mountain JL, Roberts JS, et al. Navigating a research partnership between academia and industry to assess the impact of personalized genetic testing. Genet Med. 2012;14:268-73.
19. Degner LF, Sloan JA, Venkatesh P. The Control Preferences Scale. Can J Nurs Res. 1997;29:21-43.
20. Case DO, Andrews JE, Johnson JD, Allard SL. Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. J Med Libr Assoc. 2005;93:353-62.
21. Donker T, van Straten A, Marks I, Cuijpers P. Quick and easy self-rating of Generalized Anxiety Disorder: validity of the Dutch web-based GAD-7, GAD-2 and GAD-SI. Psychiatry Res. 2011;188:58-64.
22. Sanderson SC, O'Neill SC, Bastian LA, Bepler G, McBride CM. What can interest tell us about uptake of genetic testing? Intention and behavior amongst smokers related to patients with lung cancer. Public Health Genomics. 2010;13:116-24.
23. 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;14:178-89.
24. Potokar DN, Stein CH, Darrah OA, Taylor BC, Sponheim SR. Knowledge and attitudes about personalized mental health genomics: narratives from individuals coping with serious mental illness. Community Ment Health J. 2012;48:584-91.
25. 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;15:840-55.
26. Sanderson SC, Wardle J, Jarvis MJ, Humphries SE. Public interest in genetic testing for susceptibility to heart disease and cancer: a population-based survey in the UK. Prev Med. 2004;39:458-64.
27. Stone AA, Bachrach CA, Jobe JB, Kurtzman HS, Cain VS. The science of self-report: implications for research and practice. 1st ed. Hove: Psychology Press; 1999.