Privacy attitudes among early adopters of emerging health technologies

PLoS ONE

Volumn 11, Issue 11, 2016, Pages

  Cheung, Cynthia ^a   Bietz, Matthew J ^a,b   Patrick, Kevin ^a,c   Bloss, Cinnamon S ^a,c,d  

^a UNIVERSITY OF CALIFORNIA   (United States)

^b Ringgold Standard Institution Informatics   (United States)

^c UNIVERSITY OF CALIFORNIA   (United States)

^d UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADOPTION; CONCEPTION; CONTENT ANALYSIS; CONTROLLED STUDY; DNA TRANSCRIPTION; GENOME; HUMAN; HUMAN EXPERIMENT; PERCEPTION; PRIVACY; SEMI STRUCTURED INTERVIEW; UNCERTAINTY; ADOLESCENT; ADULT; AGED; ATTITUDE TO HEALTH; CONFIDENTIALITY; FEMALE; HUMAN GENOME; INTERNET; MALE; MEDICAL RECORD; MEDICAL RESEARCH; MIDDLE AGED; MOBILE APPLICATION; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; BIOMEDICAL RESEARCH; CONFIDENTIALITY; FEMALE; GENOME, HUMAN; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH RECORDS, PERSONAL; HUMANS; INTERNET; MALE; MIDDLE AGED; MOBILE APPLICATIONS; PRIVACY; YOUNG ADULT;

EID: 84994756503     PISSN: None     EISSN: 19326203     Source Type: Journal    
DOI: 10.1371/journal.pone.0166389     Document Type: Article

References (28)

1. Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y. Identifying personal genomes by surname inference. Science. 2013; 339(6117):321-4. doi: 10.1126/science.1229566 PMID: 23329047.
2. Tene O, Polonetsky J. Big data for all: Privacy and user control in the age of analytics. Nw J Tech & Intell Prop. 2012; 11:xxvii.
3. Turow J, Hennessy M, Draper N. The tradeoff fallacy: How marketers are misrepresenting American consumers and opening them up to exploitation. The Annenberg School for Communication, University of Pennsylvania. 2015.
4. Turow J, Feldman L, Meltzer K. Open to Exploitation: America's Shoppers Online and Offline. 2005.
5. Sheehan KB. In Poor Health: An Assessment of Privacy Policies at Direct-to-Consumer Web Sites. Journal of Public Policy & Marketing. 2005; 24(2):273-83.
6. McDonald AM, Cranor LF. Cost of reading privacy policies, the. ISJLP. 2008; 4:543.
7. Acquisti A, Brandimarte L, Loewenstein G. Privacy and human behavior in the age of information. Science. 2015; 347(6221):509-14. doi: 10.1126/science.aaa1465 PMID: 25635091
8. Hudson KL, Holohan MK, Collins FS. Keeping Pace with the Times - The Genetic Information Nondiscrimination Act of 2008. New England Journal of Medicine. 2008; 358(25):2661-3. doi: 10.1056/NEJMp0803964 PMID: 18565857.
9. Green RC, Lautenbach D, McGuire AL. GINA, genetic discrimination, and genomic medicine. N Engl J Med. 2015; 372(5):397-9. doi: 10.1056/NEJMp1404776 PMID: 25629736.
10. Rubinstein IS. Big data: the end of privacy or a new beginning? International Data Privacy Law. 2013; 3(2):74-87.
11. Westin AF, O'Grady AM, Sever JM, Equifax I, Louis H, Associates. Equifax-Harris mid-decade consumer privacy survey, 1995. New York, NY: Louis Harris and Associates; 1995. v, 73, 10 p. p.
12. Viseu A, Clement A, Aspinall J. Situating privacy online: Complex perceptions and everyday practices. Information, Communication & Society. 2004; 7(1):92-114.
13. Solove DJ. A Taxonomy of Privacy. University of Pennsylvania Law Review. 2006; 154(3):477-564. doi: 10.2307/40041279
14. Ball MP, Bobe JR, Chou MF, Clegg T, Estep PW, Lunshof JE, et al. Harvard Personal Genome Project: lessons from participatory public research. Genome Med. 2014; 6(2):10. doi: 10.1186/gm527 PMID: 24713084
15. Bietz MJ, Bloss CS, Calvert S, Godino JG, Gregory J, Claffey MP, et al. Opportunities and challenges in the use of personal health data for health research. Journal of the American Medical Informatics Association. 2015:ocv118.
16. Rogers EM. Diffusion of Innovations. 5 ed. New York, NY: Free Press; 2003. 576 p.
17. Meyer G. Diffusion Methodology: Time to Innovate? Journal of Health Communication. 2004; 9(sup1):59-69. doi: 10.1080/10810730490271539 PMID: 14960404
18. Gollust S, Gordon E, Zayac C, Griffin G, Christman M, Pyeritz R, et al. Motivations and perceptions of early adopters of personalized genomics: perspectives from research participants. Public health genomics. 2012; 15(1):22-30. doi: 10.1159/000327296 PMID: 21654153
19. Berwick DM. Disseminating innovations in health care. JAMA. 2003; 289(15):1969-75. doi: 10.1001/jama.289.15.1969 PMID: 12697800
20. Corbin J, Strauss A. Basics of qualitative research: Techniques and procedures for developing grounded theory: Sage publications; 2014.
21. Charmaz K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Thousand Oaks, CA: Sage; 2006.
22. Slovic P. The psychology of risk. Saúde e Sociedade. 2010; 19(4):731-47.
23. Angrist M. Eyes wide open: the personal genome project, citizen science and veracity in informed consent. Personalized Medicine. 2009; 6(6):691-9. doi: 10.2217/pme.09.48 PMID: 22328898
24. Malin B, Sweeney L, editors. Re-identification of DNA through an automated linkage process. Proceedings of the AMIA Symposium; 2001: American Medical Informatics Association.
25. Anderson C. The end of theory: The data deluge makes the scientific method obsolete. Wired; 2008.
26. Wolf SM. Return of Individual Research Results and Incidental Findings: Facing the Challenges of Translational Science. Annual Review of Genomics and Human Genetics. 2013; 14(1):557-77. doi: 10.1146/annurev-genom-091212-153506 PMID: 23875796.
27. Mayer-Schönberger V. Connecting the dots. Science. 2015; 347(6221):481-.
28. Westin AF. How the public views privacy and health research. Results of a national survey commissioned by the Institute of Medicine Committee on" Health research and the privacy of health information: The HIPPA Privacy Rule. 2007:2011-1107.