Health Information in the Background: Justifying Public Health Surveillance Without Patient Consent

Chapter
First Online:
Part of the Law, Governance and Technology Series book series (LGTS, volume 11)

Abstract

Often we think of collecting, storing, and using health data without patient consent as unethical and illegal. However, there are situations where the collection of health information without consent is not only ethical and legal, it is essential for community and public health. Public health surveillance – the ongoing, systematic collection, analysis, and interpretation of health-related data with the a priori purpose of preventing or controlling disease or injury, or identifying unusual events of public health importance, followed by the dissemination and use of information for public health action – allows the government to meet its ethical obligation to protect the health of the population. By adhering to public health ethics principles, public health surveillance systems, including pervasive information and computing technology (PICT), can be designed and implemented in ways that both honor individuals and protect communities.

Keywords

Public Health Intervention Public Health Official Public Health Professional Basic Interest Syndromic Surveillance 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.
This is a preview of subscription content, log in to check access.

Notes

Acknowledgments

The author would like to acknowledge Dr. Frances McCarty for her thoughtful comments on the chapter.

The findings and conclusions in this report are those of the author and do not necessarily represent the official position of CDC.

References

  1. Allen, A. 2004. Privacy in healthcare. In Encyclopedia of bioethics, 3rd ed, ed. S.G. Post, 2120–2130. New York: Macmillan Reference USA.Google Scholar
  2. Beauchamp, D.E. 1980. Public health and individual liberty. Annual Review of Public Health 1: 121–136.CrossRefGoogle Scholar
  3. Bowditch, H.I., D.L. Webster, J.C. Hoadley, et al. 1915. Letter from the Massachusetts State Board of Health to physicians. Public Health Reports 12(Suppl): 31.Google Scholar
  4. Brown, P. 2000. Cancer registries fear imminent collapse. BMJ 321(7265): 849.CrossRefGoogle Scholar
  5. Carrel, M., and S. Rennie. 2008. Demographic and health surveillance: Longitudinal ethical considerations. Bulletin of the World Health Organization 86(8): 577–656.CrossRefGoogle Scholar
  6. Dawson, A., and M. Verweij. 2008. The steward of the Millian state. Public Health Ethics 1(3): 193–195.CrossRefGoogle Scholar
  7. DeCew, J. 2012. Privacy. The Stanford Encyclopedia of Philosophy (Fall 2012 Edition), Edward N. Zalta (ed.), Available at http://plato.stanford.edu/archives/fall2012/entries/privacy/.
  8. Fairchild, A.L., and D.M. Johns. 2012. Beyond bioethics: Reckoning with the public health paradigm. American Journal of Public Health 102(8): 1447–1450.CrossRefGoogle Scholar
  9. Friedman, C.P., A.K. Wong, and D. Blumenthal. 2010. Achieving a nationwide learning health system. Science Translational Medicine 2(57): 1–3.CrossRefGoogle Scholar
  10. Goodman, R.A., J.M. Posid, and T. Popovic. 2012. Investigation of selected historically important syndromic outbreaks: Impact and lessons learned for public health preparedness and response. American Journal of Public Health 102(6): 1079–1090.CrossRefGoogle Scholar
  11. Gostin, L.O. 2001. Health information: Reconciling personal privacy with the public good of human health. Health Care Analysis 9: 321–335.CrossRefGoogle Scholar
  12. U.S. Supreme Court. 1905. Jacobson v Commonwealth of Massachusetts, 197 U.S. 11.Google Scholar
  13. Jennings, B. 2009. Public health and liberty: Beyond the Millian paradigm. Public Health Ethics 2(2): 123–134.CrossRefGoogle Scholar
  14. Lee, L.M., and L.O. Gostin. 2009. Ethical collection, storage, and use of public health data: A proposal for a national privacy protection. Journal of the American Medical Association 302(1): 82–84.CrossRefGoogle Scholar
  15. Lee, L.M., and S.B. Thacker. 2011. Public health surveillance and knowing about health in the context of growing sources of health data. American Journal of Preventive Medicine 41(6): 636–640.CrossRefGoogle Scholar
  16. Lee, L.M. 2012. Public health ethics theory: Review and path to convergence. The Journal of Law, Medicine & Ethics 40(1): 85–98.CrossRefGoogle Scholar
  17. Lee, L.M., C.M. Heilig, and A. White. 2012. Ethical justification for conducting public health surveillance without patient consent. American Journal of Public Health 102(1): 38–44.CrossRefGoogle Scholar
  18. Mill, J.S. 2008 [1859]. On liberty. In John Stuart Mill: On liberty and other essays, ed. J. Gray, 5–128. London: Oxford University Press.Google Scholar
  19. National Office of Vital Statistics. 1953. Reported incidence of selected notifiable diseases: United States, each division and state, 1920–1950. Vital Statistics Special Report 37: 1180–1181. Washington, DC: US Department of Health, Education and WelfareGoogle Scholar
  20. Nesland, V.S., R.A. Goodman, J.G. Hodge, and J.P. Middaugh. 2010. Legal considerations in public health surveillance in the United States. In Principles and practice of public health surveillance, 3rd ed, ed. L.M. Lee, S.M. Teutsch, S.B. Thacker, and M.E. St Louis, 217–235. New York: Oxford University Press.CrossRefGoogle Scholar
  21. Powers, M., R. Faden, and Y. Saghai. 2012. Liberty, Mill and the framework of public health ethics. Public Health Ethics 5(1): 6–15.CrossRefGoogle Scholar
  22. Rawls, J. 2001. Justice as fairness. Cambridge: Harvard University Press.Google Scholar
  23. Roush, S., G.S. Birkhead, D. Koo, A. Cobb, and D. Fleming. 1999. Mandatory reporting of diseases and conditions by health care professionals and laboratorians. Journal of the American Medical Association 282(2): 164–170.CrossRefGoogle Scholar
  24. Rubel, A. 2012. Justifying public health surveillance: Basic interests, unreasonable exercise, and privacy. Kennedy Institute of Ethics Journal 22(1): 1–33.CrossRefGoogle Scholar
  25. Sosin, D.M. 2003. Syndromic surveillance: The case for skillful investment. Biosecurity and Bioterrorism: Biodefense Strategy, Practice, and Science 1(4): 247–253.CrossRefGoogle Scholar
  26. Thacker, S.B. 2010. Historical development. In Principles and practice of public health surveillance, 3rd ed, ed. L.M. Lee, S.M. Teutsch, S.B. Thacker, and M.E. St Louis, 1–17. New York: Oxford University Press.CrossRefGoogle Scholar
  27. Tu, J.V., D.J. Willison, F.L. Silver, et al. 2004. Impracticability of informed consent in the Registry of the Canadian Stroke Network. The New England Journal of Medicine 350(14): 1414–1421.CrossRefGoogle Scholar
  28. Verity, C., and A. Nicoll. 2002. Consent, confidentially, and the threat to public health surveillance. BMJ 324: 1210–1213.CrossRefGoogle Scholar
  29. Warren, S., and L. Brandeis L. 1890. The right to privacy. Harvard Law Review 4: 193–220.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht (outside the USA) 2014

Authors and Affiliations

  1. 1.Office of Surveillance, Epidemiology, and Laboratory ServicesCenters for Disease Control and PreventionAtlantaUSA

Personalised recommendations