Experiences of early users of direct-to-consumer genomics in Switzerland: An exploratory study

Public Health Genomics

Volumn 15, Issue 6, 2012, Pages 352-362

  Vayena, E ^a   Gourna, E ^a   Streuli, J ^a   Hafen, E ^b   Prainsack, B ^c  

^a UNIVERSITY OF ZURICH   (Switzerland)

^b ETH ZURICH   (Switzerland)

^c BRUNEL UNIVERSITY   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; CONSUMER; CONSUMER HEALTH INFORMATION; DIRECT TO CONSUMER GENOMICS TESTING; EXPERIENCE; EXPLORATORY RESEARCH; FEMALE; GENETIC SCREENING; GENOMICS; HUMAN; MALE; MEDICAL RESEARCH; PRIORITY JOURNAL; QUESTIONNAIRE; SEMI STRUCTURED INTERVIEW; SWITZERLAND; TECHNOLOGY;

ADULT; ATTITUDE TO HEALTH; CONSUMER PARTICIPATION; FEMALE; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; GENOMICS; HUMANS; INDIVIDUALIZED MEDICINE; INFORMATION DISSEMINATION; MALE; MOTIVATION; PERCEPTION; QUESTIONNAIRES; YOUNG ADULT;

EID: 84868686659     PISSN: 16624246     EISSN: 16628063     Source Type: Journal    
DOI: 10.1159/000343792     Document Type: Article

References (40)

1. Harvey A, Brand A, Holgate ST, Kristiansen LV, Lehrach H, Palotie A, Prainsack B: The future of technologies for personalised medicine. New Biotechnol 2012; 29: 625-633.
2. Public Health Genomics European Network (PHGEN). http://www.phgen.eu.
3. Evans JP, Green RC: Direct to consumer genetic testing: avoiding a culture war. Genet Med 2009; 11:568-569.
4. Bunnik EM, Schermer MH, Janssens AC: Personal genome testing: test characteristics to clarify the discourse on ethical, legal and societal issues. BMC Med Ethics 2011; 12:11.
5. Evans JP, Dale DC, Fomous C: Preparing for a consumer-driven genomic age. N Engl J Med 2010; 363:1099-1103.
6. Kuehn BM: Risks and benefits of direct-to-consumer genetic testing remain unclear. JAMA 2008; 300:1503-1505.
7. Patch C, Sequeiros J, Cornel MC: Genetic horoscopes: is it all in the genes? Points for regulatory control of direct-to-consumer genetic testing. Eur J Hum Genet 2009; 17: 857-859.
8. Caulfield T: Direct-to-consumer genetics and health policy: a worst-case scenario? Am J Bioeth 2009; 9: 48-50.
9. Gurwitz D, Bregman-Eschet Y: Personal ge-nomics services: whose genomes? Eur J Hum Genet 2009; 17:883-889.
10. Mykitiuk R: Caveat emptor: direct-to-con-sumer supply and advertising of genetic testing. Clin Invest Med 2004; 27: 23-32.
11. Wilfond B, Ross LF: From genetics to ge-nomics: ethics, policy, and parental decision-mak ing. J Pediatr Psychol 2009; 34: 639-647.
12. Prainsack B, Wolinsky H: Direct-to-con-sumer genome testing: opportunities for pharmacogenomics research? Pharmacoge-nomics 2010; 11:651-655.
13. 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; 20: 811-816.
14. Bloss CS, Schork NJ, Topol EJ: Effect of di-rect-to-consumer genomewide profiling to assess disease risk. N Engl J Med 2011; 364: 524-534.
15. Su Y, Howard H, Borry P: Users' motivat ions to purchase direct-to-consumer genome-wide testing: an exploratory study of personal stories. J Community Genet 2011; 2:135-146.
16. 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:e13473.
17. Wright C, MacArthur DG: Direct to consumer genetic testing; in Best DH, Swensen JJ (eds): Molecular Genetics and Personalized Medicine-Molecular and Translation-al Medicine. New York, Springer, 2012.
18. Borry P, van Hellemondt RE, Sprumont D, Jales CF, Rial-Sebbag E, Spranger TM, Cur-ren L, Kaye J, Nys H, Howard H: Legislation on direct-to-consumer genetic testing in seven European countries. Eur J Hum Genet 2012; 20:715-721.
19. Google Insights: Insights for search. http://www.google.com/insights/ search/(accessed May 22, 2012).
20. Academia Engelberg: Personalized Medicine: 10th dialogue on Science. September 14-16, 2011. http://www.academia-engel-berg.ch/conference-2011.php5 (accessed May 22, 2012).
21. European Commission: eurostat: School enrolment and levels of education. http://epp. eurostat.ec.europa.eu/statistics-explained/index.php/School- enrolment-and-early-leavers-from-education-and-training (accessed October 10, 2012).
22. Federal Department of Foreign Affairs: People. http://www.swissworld.org/ en/people/language/english/(accessed May 20, 2012).
23. Organisation for Economic Co-operation and Development (OECD): Country statistical profile: Switzerland 2011-2012. http://www.oecd-ilibrary.org/ economics/country-statistical-profile-switzerland-20752288-table-che (accessed May 22, 2012).
24. Swiss Biotech Association: Swiss Biotech Report 2012. http://www.swissbiotech.org/home (accessed May 20, 2012).
25. Bundesgesetz über genetische Untersuchungen beim Menschen (GUMG): Article 5. http://www.admin.ch/ch/d/ff/2004/5483. pdf (accessed May 22, 2012).
26. Expertenkommission für genetische Untersuchungen beim Menschen (GUMEK): Informationskampagne: Gentests aus dem Internet 2009. http://www.bag.admin.ch/the-men/medizin/00683/02724/04638/index. html?lang=de (accessed May 22, 2012).
27. Gollust SE, Gordon ES, Zayac C, Griffin G, Christman MF, Pyeritz RE, Wawak L, Bernhardt BA: Motivations and perceptions of early adopters of personalized genomics: perspectives from research participants. Public Hea lth Genomics 2012; 15: 22-30.
28. Ormond KE, Hudgins L, Ladd JM, Magnus DM, Greely HT, Cho MK: Medical and graduate students' attitudes toward personal ge-nomics. Genet Med 2011; 13: 400-408.
29. Friese S: Qualitative Data Analysis with ATLAS.ti. London, Sage Publications, 2012.
30. Corbin J, Strauss AL, Juliet M: Grounded Theory in Practice. London, Sage Publications, 1997.
31. Eriksson N, Macpherson JM, Tung JY, Hon LS, Naughton B, Saxonov S, Avey L, Wor-cicki A, Pe'er I, Mountain J: Web-based, participant-driven studies yield novel genetic associations for common traits. PLoS Genet 2010; 6:e1000993.
32. Sørensen K, Brand H: Health literacy: the essential catalyst for the responsible and effective translation of genome-based information for the benefit of population health. Public Healt h Genomics 2011; 14: 195-200.
33. Kohane IS, Altman RB: Health-information altruists-a potentially critical resource. N Engl J Med 2005; 353: 2074-2077.
34. Foster MW, Mulvihill JJ, Sharp RR: Evaluating the utility of personal genomic information. Genet Med 2009; 11:570-574.
35. Lesko LJ, Zineh I, Huang SM: What is clinical utility and why should we care? Clin Pharmacol Ther 2010; 88:729-733.
36. Brand A: Public health genomics-public health goes personalized? Eur J Public Health 2011; 21:2-3.
37. Cesuroglu T, Ommen B, Malats N, Sudbrak R, Lehrach H, Brand A: Public health perspective: from personalized medicine to personal health. Pers Med 2012; 9: 115-119.
38. Van Ommen GB, Cornel MC: Recreational genomics? Dreams and fears on genetic susceptibility screening. Eur J Hum Genet 2008; 16: 403-404.
39. Evans JP: Recreational genomics; what's in it for you? Genet Med 2008; 10:709-710.
40. Rapp R: Testing women, testing the fetus. London, Routledge, 1999.