The articles, books and websites recommended here provide an excellent starting point for classroom or research team discussions about the ethical conduct of research with human subjects, participants, co-researchers, etc.
Tuskegee Syphilis Study
- Fred Gray's UAF lecture (1/19/07) about the Tuskegee Syphilis Study. Archived webcast available at mms://catstream2.cat.uaf.edu/gray (requires Windows Media Player). DVDs may be checked out from the Office of Research Integrity for UAF educational uses.
- Fred D. Gray. 1998. The Tuskegee Syphilis Study. NewSouth Books. Montgomery, AL. ISBN 1588380890.
James H. Jones. 1993. Bad Blood: The Tuskegee Syphilis Experiment. The Free Press. New York, NY. ISBN 0029166764.
Centers for Disease Control and Prevention website. The Tuskegee Timeline. This is a very brief overview of the events of the Tuskegee Syphilis Study.
The Tuskegee University National Center for Bioethics homepage has additional information about the study and related events.
Barrow Alcohol Study
Samuel Z Klausner. 1979. The Inupiat: Economics and alcohol on the Alaskan North Slope: a final report on alcohol use in Barrow. Center for Research on the Acts of Man. Philadelphia, PA. ASIN: B0006XDVN4.
American Indian and Alaska Native Mental Health Research devoted a special issue of the journal (vol.2, no.3, 1989) to the Barrow Alcohol Study. The lead article by Foulk and the articles by Attneave, Beauvais, Trimble, and Mohatt have been recommended by Jim Allen; however, each article in the issue lends unique insight and perspective. This journal is available in Rasmuson Library.
New York Times articles on the Barrow Alcohol Study. January 22, 1980: Alcohol Plagues Eskimos by Dava Sobel. January 29, 1980: Eskimos Irate Over Alcoholism Study by unknown. Both articles are available from the NY Times Article Archives website.
Case Study Example.
Havasupai Diabetes Study
Rex Dalton. 2004. When two tribes go to war. Nature, vol. 430 (July 29): 500-502.
Paul Rubin, Indian Givers, Phoenix New Times, May 27, 2004.
Nature (editorial), Tribal Culture Versus Genetics, 430 Nature, 489, July 29, 2004.
Order in Tilousi v. Arizona State University, No. 04-CV-1290 (D. Ariz. March 3, 2005)
The National Congress of American Indians (NCAI) Resolution #SAC-06-01 TITLE: Supporting the Havasupai Indian Tribe in their Claim Against the Arizona Board of Regents Regarding the Unauthorized Use of Blood Samples and Research, Adopted at the 63rd Annual Session of the NCAI in Sacramento, CA, October 1-6, 2006.
Jana Bommersbach, Arizona's Broken Arrow, Phoenix Magazine, November 2008, p.134-148.
Airforce Aeromedical Laboratory Thyroid Function Study (Iodine 131)
Committee on Evaluation of 1950s Air Force Human Health Testing in Alaska Using Radioactive Iodine-131, Commission on Geosciences, Environment, and Resources, Commission on Life Sciences, National Research Council. 1996. The Arctic Aeromedical Laboratory’s Thyroid Function Study: A Radiological Risk and Ethical Analysis. You can buy or read this book for free online at http://newton.nap.edu/catalog/5106.html.
A free executive summary is available at http://newton.nap.edu/execsumm_pdf/5106.
Genographic Project (National Geographic Society)
This study is currently (December 2006) under review by the Alaska Area Institutional Review Board, sponsored by the Indian Health Service.
New York Times Article: December 10, 2006: DNA tracking project stalled while benefits are debated by Amy Harmon. (Reprinted in the Daily News-Miner 12/11/06).
National Geographic, Genographic Project Website.
- George J. Annas and Michael Grodin. 1992. The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation. Oxford University Press. New York, NY. ISBN: 0195101065.
- Jon Harkness, Susan E. Lederer and Daniel Wikler. 2001. Laying Ethical Foundations for Clinical Research. Bulletin of the World Health Organization, vol. 79 (4): 365-372. This article provides a reproduction and discussion of Henry K. Beecher. 1966. Ethics and Clinical Research. New England Journal of Medicine, vol.274(24): 1354-1360.
- Thomas Blass. 2004. The Man Who Shocked the World: The Life and Legacy of Stanley Milgram. Basic Books. New York, NY. ISBN: 0738203998.
- Ngina Lythcott. 2000. Changing the Research Paradigm: Community Involvement in Population-Based Research. Cancer Supplement, vol. 88(5): 1214-1216.
- Gerald V. Mohatt, et al. 2004. Unheard Alaska: Culturally Anchored Participatory Action Research on Sobriety With Alaska Natives. American Journal of Community Psychology, vol. 33(3/4): 263-273.
- Mohatt, G.V., Thomas, L.R., People Awakening Team. (2005). "I wonder, why would you do it that way?": Ethical dilemmas in doing participatory research with Alaska Native communities. In J.E. Trimble & C.B. Fisher (Eds.), Handbook of Ethical Research with Ethnocultural Populations and Communities. New York: Sage.
- Swazo, Norman K. 2005. Research Integrity and Rights of Indigenous Peoples: Appropriating Foucault's Critique of Knowledge/Power , Studies in History and Philosophy of Biological and Biomedical Sciences, 36: 568-584.
- Shelton, Brett Lee (J.D.). Consent and Consultation in Genetic Research on American Indians and Alaska Natives , Indigenous Peoples Council on Biocolonialism website.
To recommend additional readings or topics for this list please contact the Office of Research Integrity (x7800 or x7832).