Protecting Posted Genes: Social Networking and the Limits of GINA

American Journal of Bioethics

Volumn 14, Issue 11, 2014, Pages 32-44

  Soo Jin Lee, Sandra ^a   Borgelt, Emily ^a  

^a STANFORD UNIVERSITY   (United States)

Author keywords

direct to consumer genetic testing; genetic testing; GINA; personal genomics; social media; social networking

Indexed keywords

COMMERCIAL PHENOMENA; EMPLOYMENT; ETHICS; GENETIC PRIVACY; GENETIC SCREENING; GENOTYPE; HUMAN; INFORMATION DISSEMINATION; INTERNET; LEGISLATION AND JURISPRUDENCE; POLICY; PREJUDICE; PROCEDURES; SOCIAL MEDIA; SOCIAL NETWORK; STANDARDS; TRENDS; UNITED STATES; WORKPLACE;

COMMERCE; EMPLOYMENT; GENETIC PRIVACY; GENETIC TESTING; GENOTYPE; HUMANS; INFORMATION DISSEMINATION; INTERNET; PREJUDICE; PUBLIC POLICY; SOCIAL MEDIA; SOCIAL NETWORKING; UNITED STATES; WORKPLACE;

EID: 84908051647     PISSN: 15265161     EISSN: 15360075     Source Type: Journal    
DOI: 10.1080/15265161.2014.957417     Document Type: Article

References (43)

1. 23 and Me. 2013. Announcing the 23 and Me personal genome API. September 18. Available at: http://blog.23andme.com/news/announcements/announcing-the-23andme-personal-genome-api (accessed September 18, 2013).
2. Abril, P. S., A. Levin, and A. D. Riego. 2012. Blurred boundaries: Social media privacy and the twenty-first-century employee. American Business Law Journal 49(1): 63–124.
3. Alten, P. 2009. GINA: A Genetic Information Nondiscrimination solution in search of a problem. Florida Law Review 61: 379–401.
4. boyd, d. m., and N. B. Ellison. 2007. Social network site: Definition, history, and scholarship. Journal of Computer-Mediated Communication 13(1): article 11. Available at: http://jcmc.indiana.edu/vol13/issue1/boyd.ellison.html
5. Brenner SE. 2013. Be prepared for the big genome leak. Nature 498(7453): 139.
6. Department of Health and Human Services. 2013. FDA 23andMe. Inc. warning letter. Document number: GEN1300666. Available at: http://www.fda.gov/iceci/enforcementactions/warningletters/2013/ucm376296.htm (accessed May 6, 2014).
7. Equal Employment Opportunity Commission. 2013a. Prohibited employment policies/practices. Available at: http://www.eeoc.gov/laws/practices/index.cfm (accessed September 12, 2013).
8. Equal Employment Opportunity Commission. 2013b. Fabricut to pay $50,000 to settle EEOC disability and genetic information discrimination lawsuit. May 7. Available at: http://www.eeoc.gov/eeoc/newsroom/release/5-7-13b.cfm (accessed July 10, 2013).
9. Equal Employment Opportunity Commission. 2013c. EEOC files class genetic information discrimination suit against Corning Rehab Center. May 16. Available at: http://www.eeoc.gov/eeoc/newsroom/release/5-16-13a.cfm (accessed July 10, 2013).
10. Equal Employment Opportunity Commission. 2013d. Genetic Information Non-discrimination Act changes FY 2010–2012. Available at: http://www.eeoc.gov/eeoc/statistics/enforcement/genetic.cfm (accessed July 10, 2013).
11. Experian Marketing Services. 2013. Experian Marketing Services reveals 27 percent of time spent online is on social networking. April 16. Available at: http://press.experian.com/United-States/Press-Release/experian-marketing-services-reveals-27-percent-of-time-spent-online-is-on-social-networking.aspx (accessed September 6, 2013).
12. Facebook. 2012. Data use policy. December 11. Available at: https://www.facebook.com/full_data_use_policy (accessed September 6, 2013).
13. Facebook. 2013. Appearing in search engine results. Available at: https://www.facebook.com/help/392235220834308 (accessed September 6, 2013).
14. Federal Register. 2010. 29 CFR Part 1635. November 9. Regulations under the Genetic Information Nondiscrimination Act of 2008. Available at: http://www.gpo.gov/fdsys/pkg/FR-2010-11-09/pdf/2010-28011.pdf
15. Federal Register. 2014. 26 CFR Parts 1, 54, and 301. February 12. Shared Responsibility for Employers Regarding Health Coverage; Final rule. Available at: http://www.gpo.gov/fdsys/pkg/FR-2014-02-12/pdf/2014-03082.pdf
16. Freeman, B., and S. Chapman. 2008. Gone viral? Heard the buzz? A guide for public health practitioners and researchers on how Web 2.0 can subvert advertising restrictions and spread health information. Journal of Epidemiology & Community Health 62: 778–782.
17. Goel, L. 2013. Facebook leads an effort to lower barriers to Internet access. New York Times, August 20, B1. Available online at: http://www.nytimes.com/2013/08/21/technology/facebook-leads-an-effort-to-lower-barriers-to-internet-access.html (accessed September 10, 2013).
18. GovTrack. 2013. Social Networking Online Protection Act, H.R. 537. 113th Cong. Available at: http://www.govtrack.us/congress/bills/113/hr537#overview (accessed September 16, 2013).
19. Greenbaum, D., J. Du, and M. Gerstein 2008. Genomic anonymity: Have we already lost it? American Journal of Bioethics 8: 71–74.
20. Grossman, L. 2006. You—yes, you—are TIME's person of the year. TIME Magazine 168(26). Available at: http://content.time.com/time/magazine/article/0,9171,1570810,00.html (accessed September 9, 2013).
21. Grossman, L. 2010. Person of the year 2010: Mark Zuckerberg. TIME Person of the Year 176(26). Available at: http://content.time.com/time/specials/packages/article/0,28804,2036683_2037183,00.html (accessed September 9, 2013).
22. Hamilton, A. 2008. Invention of the year: 1. The retail DNA test. TIME Magazine. Available at: http://content.time.com/time/specials/packages/article/0,28804,1852747_1854493_1854113,00.html (accessed September 9, 2013).
23. Harris, A., S. Wyatt, and S. E. Kelly. 2013. The gift of spit (and the obligation to return it). Information, Communication & Society 16(2): 236–257.
24. Knoppers, B. A. 2010. Consent to ‘person’ genomics and privacy. EBMO Reports 11: 416–419.
25. Kovach, K. A., J. Jordan, K. Tansey, and E. Framinan. 2002. The balance between employee privacy and employer interests. Business and Society Review 105(2): 289–298.
26. Lee, S. S.-J. 2013a. Race, risk and recreation in personal genomics: The limits of play. Special issue: Public health genomics: Anthropological interventions in the quest for molecular medicine. Ed. Karen-Sue Taussig and Sahra Gibbons. Medical Anthropology Quarterly. 27(4): 550–569.
27. Lee, S. S.-J. 2013b. American DNA: The politics of potentiality in a genomic age. Special issue: The anthropology of potentiality: exploring the productivity of the undefined and its interplay with notions of humanness in new medical practices. Current Anthropology 54(7): 79–86.
28. Lee, S. S.-J. 2014. “Empowerment” and the rendering of biocapital in direct-to-consumer personal genomics. In BRCA cultures: A transnational perspective on breast cancer genetic research and medical practices, ed. S. Gibbon, G. Joseph, E. Kampriani, J. Mozersky, A. zu Nieden, and S. Palfner. New York, NY: Routledge Press.
29. Lee, S. S.-J., and L. Crawley. 2009. Research 2.0: Social networking and direct-to-consumer (DTC) genomics. American Journal of Bioethics 9(6): 35–44.
30. Lee, S. S.-J., S. L. Vernez, K. E. Ormond, and M. Granovetter. 2013. Attitudes towards social networking and sharing behaviors among consumers of direct-to-consumer personal genomics. Journal of Personalized Medicine 3: 275–287.
31. Lowrance, W. W., and F. S. Collins. 2007. Identifiability in genomic research. Science 317: 600–602.
32. Lunshof, J. E., Chadwich, R., Vorhaus, D. B., and G. M. Church. 2008. From genetic privacy to open consent. Nature Reviews Genetics 9: 406–411.
33. McGuire, A. L., and R. A. Gibbs. 2006. No longer de-identified. Science 312:3 70–371.
34. Microsoft, Inc. 2010. Crosstab. Online reputation in a connected world. January. Available at: http://www.marketingtecnologico.com/ad2006/adminsc1/app/marketingtecnologico/uploads/Estudos/dpd_online%20reputation%20research_overview.pdf
35. National Conference of State Legislatures. 2013. Employer access to social media usernames and passwords 2013. Available at: http://www.ncsl.org/issues-research/telecom/employer-access-to-social-media-passwords-2013.aspx (accessed September 18, 2013).
36. National Human Genome Research Institute. 2013a. Table of state statutes related to genomics. January 8. Available at: http://www.genome.gov/27552194 (accessed September 6, 2013).
37. National Human Genome Research Institute. 2013b. Genetic discrimination. August 22. Available at: http://www.genome.gov/10002077 (accessed August 16, 2013).
38. Password Protection Act of 2013. 2013. S. 1426. 113th Cong. 2013. Available at: http://www.gpo.gov/fdsys/pkg/BILLS-113s1426is/pdf/BILLS-113s1426is.pdf (accessed September 16, 2013).
39. Social Networking Online Protection Act, H.R. 537. 2013. 113th Cong. 2013. Available at: http://www.gpo.gov/fdsys/pkg/BILLS-113hr537ih/pdf/BILLS-113hr537ih.pdf (accessed September 16, 2013).
40. Swan, M. 2009. Emerging patient-driven health care models: An examination of health social networks, consumer personalized medicine and quantified self-tracking. International Journal of Environmental Research and Public Health 6(2):492–525.
41. Swan, M. 2012. Health 2050: The realization of personalized medicine through crowdsourcing, the quantified self, and the participatory biocitizen. Journal of Personal Medicine 2:93–118.
42. Tobin, S., M. K. Cho, S. S. Lee, 2012. Customers or research participants?: Guidance for research practices in commercialization of personal genomics. Genetics in Medicine 14(10): 833–835.
43. Vernez, S., S. Keyan, E. I. Ormond, and S. S.-J. Lee. 2012. The ethics of personal genome testing: Student experiences with genotyping in the classroom. Genome Medicine 5: 24 (19 March 2013).