Skip to main content
SpringerLink
Log in

Purple Dinosaurs and Victim Consent to Research in Disasters

  • Chapter
  • First Online:
Disaster Bioethics: Normative Issues When Nothing is Normal

Part of the book series: Public Health Ethics Analysis ((PHES,volume 2))

Abstract

Informed consent is a necessary, but not sufficient, condition for ethical research on human subjects. There are some exceptions to this rule when the research involves no risk to the subject, such as data collection that cannot be linked to the subject. This chapter addresses the question of whether, and if so when, research on the victims of disasters can be ethically conducted without their consent. Drawing on a wide range of previous research conducted without consent or with dubious consent, the conclusion is that consent to research involving risks is an ethical requirement that cannot be waived in disaster-related research. If this makes some research impossible, then that research should not be done. Upholding the human rights and dignity of current victims of disasters is more important than doing research on them for the possible benefit of future disaster victims. People do not lose their human rights by becoming disaster victims.

The voluntary consent of the human subject is absolutely essential. Nuremberg Code, 1947

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 119.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 159.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Advisory Committee on Human Radiation Experiments. 1996. The Human Radiation Experiments: Final Report of the President’s Advisory Committee. New York: Oxford University Press.

    Google Scholar 

  • Annas, George J. 1998. Protecting soldiers from friendly fire: The consent requirement for using investigational drugs and vaccines in combat. American Journal of Law & Medicine 24: 245–260.

    Google Scholar 

  • Annas, George J. 2009. Globalized clinical trials and informed consent. New England Journal of Medicine 360: 2050–2053.

    Article  Google Scholar 

  • Annas, George J. 2010. Worst case bioethics: Death, destruction, and public health. New York: Oxford University Press.

    Google Scholar 

  • Annas, George J., and Michael A. Grodin. 1992. The Nazi doctors and the Nuremberg code: Human rights in human experimentation. New York: Oxford University Press.

    Google Scholar 

  • Beecher, Henry K. 1966. Ethics and clinical research. New England Journal of Medicine 274: 1354–1360.

    Article  Google Scholar 

  • Carter, Richard. 1966. Breakthrough: The saga of Jonas Salk. New York: Trident Press.

    Google Scholar 

  • Collogan, Lauren K., Farris Tuma, Regina Dolan-Sewell, Susan Borja, and Alan R. Fleischman. 2004. Ethical issues pertaining to research in the aftermath of disaster. Journal of Traumatic Stress 17: 363–372.

    Article  Google Scholar 

  • Emanuel, Ezekiel J., and Jerry Menikoff. 2011. Reforming the regulations governing research with human subjects. New England Journal of Medicine 365: 1145–1150.

    Article  Google Scholar 

  • Farmer, Paul. 2011. Haiti after the earthquake. New York: Public Affairs.

    Google Scholar 

  • Fost, Norman. 1998. Waived consent for emergency research. American Journal of Law and. Medicine 24:163–183.

    Google Scholar 

  • Fox News.com. 2010. US government apologizes for 1940s STD testing on Guatemalans. Oct 1, 2010. http://www.foxnews.com/politics/2010/10/01/government-apologizes-s-std-testing-guatemalans/. Accessed 21 October 2011.

  • Frieden, Thomas R., and Francis S. Collins. 2010. Intentional infection of vulnerable populations in 1946–1948: Another tragic history lesson. Journal of the American Medical Association 304: 2063–2064.

    Article  Google Scholar 

  • Funes, Juan M., John C. Cutler, Sacha Levitan, Jay Portnoy, and Rolando Funes. 1953. Estudios serologicos y clinicos con referencia a la sifilis en Guatemala, Centro America: II. Observaciones efectuadas en un grupo de ninos de escuela en el Puerto de San Jose. Boletin de la Oficina Sanitaria Panamericana 34: 14–18.

    Google Scholar 

  • Glantz, Leonard H., George J. Annas, Michael A. Grodin, and Wendy K. Mariner. 1998. Research in developing countries: taking ‘benefit’ seriously. Hastings Center Report no 6:38–42.

    Article  Google Scholar 

  • Glickman, Seth W., John G. McHutchison, Eric D. Peterson, Charles B. Cairns, Robert A. Harrington, Robert M. Califf, and Kevin A. Schulman. 2009. Ethical and scientific implications of the globalization of clinical research. New England Journal of Medicine 360: 816–823.

    Article  Google Scholar 

  • Graniger, Sarah., and Carol Rosenberg. 2010. U.S. apologizes to Guatemalans for 1940s STD experiment. Miami Herald, A1, October 1.

    Google Scholar 

  • Guidance for Institutional Review Boards. 2011. Clinical Investigators, and Sponsors. Exception from Informed Consent Requirements for Emergency Research, HHS. http://www.fda.gov/downloads/RegulatoryInformation/Guidances/UCM249673.pdf. Accessed 21 October 2011.

  • Hornblum, Allen M. 1998. Acres of skin: Human experiments at Holmesburg Prison. New York: Routledge.

    Google Scholar 

  • Jones, James. 1981. Bad blood: the Tuskegee syphilis experiment. New York: Free Press.

    Google Scholar 

  • Katz, Jay. 1972. Experimentation with human beings. New York: Russell Sage Foundation.

    Google Scholar 

  • Langer, Elinor. 1966. Human experimentation: New York verdict affirms patient’s rights. Science 151: 665–666.

    Google Scholar 

  • London, Alex John. 2009. Clinical research in a public health crisis: the integrative approach to managing uncertainty and mitigating conflict. Seton Hall Law Review 39: 1173–1202.

    Google Scholar 

  • Lurie, Peter., and Sidney M. Wolfe. 1997. Unethical trials of interventions to reduce perinatal transmission of the human immunodeficiency virus in developing countries. New England Journal of Medicine 337: 853–856.

    Article  Google Scholar 

  • Magnuson, Harold J., Evan W. Thomas, Sidney Olansky, Bernard L. Kaplan, Lopo de Mello, and John C. Cutler. 1956. Inoculation syphilis in human volunteers. Medicine 35: 33–82.

    Article  Google Scholar 

  • Mahoney, John F., Cassius James Van Slyke, John C. Cutler, and Henrik L. Blum. 1946. Experimental gonococcic urethritis in human volunteers. American Journal of Syphilis, Gonorrhea, and Venereal Disease 30:1–39.

    Google Scholar 

  • McNeil, Donald G. 2010. U.S. Apologizes for syphilis tests in Guatemala, New York Times, October 1. http://www.nytimes.com/2010/10/02/health/research/02infect.html. Accessed 21 October 2011.

  • Niiler, Eric. 2010. Volunteers at Walter Reed endure mosquito bites to help find a malaria vaccine. Washington Post, HE01, September 7. http://www.washingtonpost.com/wp-dyn/content/article/2010/09/03/AR2010090305111.html?sub=AR. Accessed 21 October 2011.

  • Office of Inspector General, Department Health and Human Services. 2010. Challenges to FDA’s ability to monitor and inspect foreign clinical trials (OPEI-01-08-00510). http://oig.hhs.gov/oei/reports/oei-01–08-00510.pdf. Accessed 21 October 2011.

  • Pasquali Sara, K., S. Burstein Danielle, K. Benjamin Daniel, Smith Brian, Jennifer S. Li and. 2010. Globalization of pediatric research: Analysis of clinical trials completed for pediatric exclusivity. Pediatrics 126: e687–692.

    Article  Google Scholar 

  • Peters, John J., Peers JH, Sidney Olansky, John C. Cutler, and Geraldine A. Gleeson. 1955. Untreated syphilis in the male negro. Journal of Chronic Disease 1: 127–148.

    Article  Google Scholar 

  • Petryna, Adriana., Andrew Lakoff, and Arthur Kleinman, eds. 2006. Global pharmaceuticals: Ethics, markets, practices. Durham: Duke University Press.

    Google Scholar 

  • Petryna, Adriana. 2009. When experiments travel: Clinical trials and the global search for human subjects. Princeton: Princeton University Press.

    Google Scholar 

  • Presidential Commission for the Study of Bioethical Issues. 2011. “Ethically Impossible”: STD Research in Guatemala from 1946 to 1948. http://www.bioethics.gov/cms/sites/default/files/Ethically-Impossible_PCSBI.pdf. Accessed 21 October 2011.

  • Reverby, Susan M., ed. 2000. Tuskegee’s truths: Rethinking the Tuskegee syphilis study. Chapel Hill: University of North Carolina Press.

    Google Scholar 

  • Reverby, Susan M. 2009. Examining Tuskegee: The infamous syphilis study and its legacy. Chapel Hill: University of North Carolina Press.

    Google Scholar 

  • Reverby, Susan M. 2011. “Normal exposure” and inoculation syphilis: A PHS “Tuskegee” doctor in Guatemala, 1946–1948. Journal of Policy History 23: 6–24.

    Article  Google Scholar 

  • Ronson, Jon. 2004. The men who stare at goats. New York: Simon and Schuster Paperbacks.

    Google Scholar 

  • Shuster, Evelyne 2013. Chapter 8, this volume.

    Google Scholar 

  • Smith, Stephen. 2010. Wellesley professor unearths a horror: syphilis experiments in Guatemala; US apologizes for performing unethical study in the 1940s. Boston Globe, B1, October 2. http://www.boston.com/news/local/massachusetts/articles/2010/10/02/wellesley_professor_unearths_a_horror_syphilis_experiments_in_guatemala/. Accessed 21 October 2011.

  • Solbakk, Jan Helge. 2011. In the ruins of Babel: pitfalls on the way toward a universal language for research ethics and benefit sharing. Cambridge Quarterly of Healthcare Ethics 20: 1–15.

    Article  Google Scholar 

  • Stein, Rob. 2010. U.S. infected Guatemalans for STD tests, Washington Post, A1, October 2. http://www.washingtonpost.com/wp-dyn/content/article/2010/10/01/AR2010100107299.html. Accessed 21 October 2011.

  • Stout, Genevieve W., and, John C. Cutler. 1951. Serology problems (syphilis) in Central America. Journal of Venereal Disease Information 32: 237–241.

    Google Scholar 

  • Transcript, US Department of State. 2010. Briefing on the U.S. Public Health Services STD Inoculation Study of 1946–1948 Via Teleconference. October 1. http://www.state.gov/p/wha/rls/rm/2010/148546.htm. Accessed 21 October 2011.

  • v, U.S. Stanley, 483 U.S. 669 (1987).

    Google Scholar 

  • Varmus, Harold., and David Satcher. 1997. Ethical complexities of conducting research in developing countries. New England Journal of Medicine 337: 1003–1005.

    Article  Google Scholar 

  • Ward, Robert., Saul Krugman, Joan P. Giles, A. Milton Jacobs, and Oscar Bodansky. 1958. Infectious hepatitis: Studies of its natural history and prevention. New England Journal of Medicine 258: 407–416.

    Article  Google Scholar 

  • Weiner, Tim. 2007. Legacy of ashes: The history of the CIA. New York: Doubleday.

    Google Scholar 

  • WikiLeaks. 2010. Boseley, Sarah., WikiLeaks cables: Pfizer ‘used dirty tricks to avoid clinical trial payout’, Guardian, Dec 9, 2010 [US embassy cables: Pfizer nears $75 m Nigeria settlement, cable text released by WikiLeaks and published by the Guardian. http://www.guardian.co.uk/business/2010/dec/09/wikileaks-cables-pfizer-nigeria. Accessed 21 October 2011.

Download references

Author information

Authors and Affiliations

  1. Boston University, Boston, USA

    George J. Annas

Authors
  1. George J. Annas
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to George J. Annas .

Editor information

Editors and Affiliations

  1. Dublin City University, Dublin, Dublin, Ireland

    Dónal P. O’Mathúna

  2. Dublin City University, Dublin, Ireland

    Bert Gordijn

  3. Queen’s University Belfast, Belfast, Ireland

    Mike Clarke

Rights and permissions

Reprints and permissions

Copyright information

© 2014 Springer Science+Business Media Dordrecht

About this chapter

Cite this chapter

Annas, G. (2014). Purple Dinosaurs and Victim Consent to Research in Disasters. In: O’Mathúna, D., Gordijn, B., Clarke, M. (eds) Disaster Bioethics: Normative Issues When Nothing is Normal. Public Health Ethics Analysis, vol 2. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-3864-5_9

Download citation

Publish with us

Policies and ethics

Search

Navigation