The twentieth century has been a time of rapid advances in technology. Along with this growth has come an abundance in ethical problems as science struggles to balance human life against research. The United States government was a leading force in prosecuting German doctors and military officials who operated on prisoners without their consent during World War II, but as the U. S. led the crusade against the Nazis it was committing the same crimes: research on human subjects without their understanding or consent.
In recent years, the widespread acceptance of the Internet has coincided with two historical events in human experimentation: the 25th anniversary of the Tuskegee Syphilis Study, which in the name of scientific progress left Southern Blacks infected with the venereal disease syphilis, and the admission of Secretary of Energy Hazel O'Leary that the U. S. government had been conducting radiation experiments on unknowing patients. Web pages on the subject abound; here are some relating to the subject of human experimentation and in particular to these two incidents.
http://www.cirp.org/CIRP/library/ethics/nuremberg/: The Nuremberg Code was established in 1947 as a response to Nazi experimentation on concentration camp prisoners during World War II. All nations subscribing to the code -- including the United States -- agree to abide by its rules, including the concept of voluntary consent and the idea that some scientific good should come of any research study.
http://www.ushmm.org/research/doctors/: The United States Holocaust Museum hosts a series of pages about the Nuremberg Trials, which produced the Nuremberg Code. The front page describes "pseudoscientific medical experiments" which were routine practice in the Nazi concentration camps; patients' testimony details some of the "treatments," including being willfully infected with malaria and an experimental operation on a prisoner's leg. It also includes the final sentences handed down at the trials, including seven executions, and a description of the origins of the Nuremberg Code.
http://www.spectacle.org/596/nurem.html: The May, 1996 issue of The Ethical Spectacle, an online newsletter, looked at the general issue of war crimes. Unlike the Holocaust Museum, the Spectacle argues that the Nuremberg Trials were simply a show to appease both the American and Russian public. Nazi officials were convicted under ex post facto laws, something long considered illegal in the United States. Since the public wouldn't stand for letting the Nazi leaders go unpunished and outright murdering them was out of the question, the trials at Nuremberg were an excuse to do what the American people had demanded despite the lack of a good legal precedent. It was in this environment that the Nuremberg Code was created.
http://www.brown.edu/Administration/Research_Administration/belmont/belmont.html: The Belmont Report was published in 1979, almost ten years after the last phase of the Tuskegee syphilis study. It establishes a set of ethical regulations for the U. S. Department of Health, Education, and Welfare. The report effectively restates the principles set forth in the Nuremberg Code, placing emphasis on three key principles: respect for persons, making sure that people are treated as human beings; beneficence, making sure that people are harmed as little as possible in research; and the concept of justice in choosing research subjects.
http://www.csu.edu.au/faculty/arts/humss/bioethic/resethic.htm: This page, part of a larger bioethics site at Charles Sturt University in Albury, Australia, has a few general links about human experimentation, including the Nuremberg Code and the Belmont Report. However, it also has several links pertaining to ethical rules in Australia, and in particular about studies on women.
http://www.dc.peachnet.edu/~shale/humanities/composition/assignments/experiment.html: Dr. Steven Hale, of the Humanities Division at DeKalb College, provides these pages as a resource for students writing essays on human experimentation in his English 101 class. He provides a broad set of links on the subject of human experimentation in general, and goes on to look at six specific instances, among them the Tuskegee syphilis study and the Atomic Energy Commission's radiation studies, where researchers may have overstepped the bounds of proper ethics in their research.
Beginning in 1932, the United States government funded a study of the venereal disease syphilis in Macon County, Alabama. 35 percent of the residents of Macon County had syphilis at the time (Final Report of the Tuskegee Syphilis Study Ad Hoc Advisory Panel. Washington, D. C.: U. S. Public Health Service, 1973), one of the highest syphilis concentrations in the nation.
The study sought to understand the spread of syphilis and better examine its effects on the human body. To best examine this, government researchers found it most desirable to not only have a high concentration of syphilis in a given area; they wanted a high concentration of untreated syphilis. The Final Report of the Tuskegee Syphilis Study states that, in at least one case, treatment was withheld from Macon County residents known to be infected; "written letters and open interviews" between the panel responsible for this document and participants in the study suggest that this was common practice.
This study had enormous ethical implications that were largely ignored by researchers. The intentional denial of treatment is a simple example: while 85 percent of syphilis victims receiving proper medical care for the disease recovered completely, only 35 percent not receiving treatment were able to do so (ibid.). Even once it was established during the 1940's that penicillin would effectively treat syphilis and after this treatment became commonplace around 1952-53, the study and the denial of medical care continued for another 18 years until 1970.
Other issues of discrimination and informed consent quickly came forward as well. 82.4 percent of Macon County was black; there was no written plan for the study; while residents voluntarily agreed to a medical examination there was no evidence that they knowingly consented to being the subjects of a study. The Final Report concludes that, due to a shuffling of subjects between the control and syphilitic groups and the fact that most subjects received treatment for their disease outside of the study, the study was worthless scientifically. Without letting anybody affected know what was going on, the U. S. government effectively agreed to let the residents of Macon County die.
http://www.med.virginia.edu/hs-library/historical/apology/: This site, located at the Claude Moore Health Sciences Library at the University of Virginia, is the result of a 1994 symposium on the Tuskegee syphilis study. It includes a listing of the symposium's participants, the Final Report of the Tuskegee Syphilis Study Legacy Committee, and a page detailing President Clinton's 1997 apology for the study. The report of the Legacy Committee is worth reading; it argues that, as a result of the Tuskegee study, African-Americans have become wary of medical studies of any sort, and that action should be taken "to develop a strategy to redress the damages caused by the Study and to transform its damaging legacy."
http://www-leland.stanford.edu/~njoke/: Stanford biology undergrad Njoke Thomas took a detailed look at the Tuskegee study. Like the Ad Hoc Advisory Panel, Thomas concludes that the study lacks scientific merit, but points out that in many cases the limited treatment study participants received was in fact from the doctors actually conducting the study. More importantly, Thomas examines the life of a typical Southern Black during the 1930's, when the Tuskegee study began. Malnutrition was common, and doctors were people only available to the wealthy. Instead of finding a knowledgeable population that could competently consent to a study, researchers "found throngs of blacks eager to participate" knowing only that there were doctors claiming to be willing to help them. It would never have occurred to these people to ask what the researchers were trying to find or what sort of treatment they would be receiving; "submitting voluntarily" to an examination, as researchers reported the test subjects did, was to the Macon County Negro agreeing to let them do a favor, rather than understanding and agreeing to the risks and harms involved with the study.
http://ublib.buffalo.edu/libraries/projects/cases/blood.htm: This case study of the Tuskegee study was developed at SUNY Buffalo as a teaching exercise; it appeared in the Journal of College Science Teaching. It begins by explaining what exactly causes syphilis and how it is transmitted, and then goes on to look at the history of the Tuskegee study. The page provides several tables of information, including a statistic that, as of 1963, researchers didn't know whether 20 percent of study participants were alive or not. While the questions at the bottom of the page are intended as questions for in-class discussion, they are useful questions to ask as a general ethical evaluation of the study.
In December, 1993, Secretary of Energy Hazel O'Leary made a disturbing announcement: since the 1940's, the U. S. Atomic Energy Commission had been sponsoring a series of tests on the effects of radiation on the human body. American citizens who had checked into hospitals for a variety of ailments had been secretly injected with varying amounts of plutonium and other radioactive materials without their knowledge. Most patients thought it was "just another injection," but the secret studies left enough radioactive material in the patients' bodies to readily induce cancer.
Unlike the Tuskegee study, the researchers here were careful to follow up on their patients, and in many cases were able to determine where the plutonium had spread to after the patients' death several years later. However, its methods are arguably more ethically questionable than those used in the Tuskegee study. In the AEC tests, the patients' trust in their doctors and hospitals had essentially been betrayed. While the patients did receive the treatment they needed for their initial ailment, they were being given something whose effects were wholly unknown but was expected to cause harm.
Other experiments were conducted with other agencies. "Human Experiment 133" tested the effects upon the pilot and crew of an aircraft flying through a radiation cloud for 25-40 minutes. The Department of Defense ran tests on people living downwind of atomic tests. Prisoners in Washington and Oregon were exposed to radiation with only minimal consent. The true purposes of these tests were kept hidden from the public and the test subjects for almost 50 years.
http://tis-nt.eh.doe.gov/ohre/roadmap/achre/: The fundamental government document about this radiation testing is the Final Report of the Advisory Committee on Human Radiation Experiments (the ACHRE Report). The Department of Energy set up this site for ACHRE. It includes a description of what ACHRE is and why it was established along with the entire ACHRE Report. This site also has a great deal of background material on the subject of radiation in general, along with a look at the history of radiation research since World War II. AHCRE also looks directly at the ethical challenges presented by radiation work, recounting the decisions of the researchers rather than coming to any conclusions on its own.
This site is well-organized and has a huge amount of information. The main DoE Human Radiation Experiments page contains links to most of this information, including a listing of all of the radiation experiments, oral histories of some of the participants, and a listing of declassified DoE documents about the radiation experiments.
http://www.brown.edu/Courses/Bio_Community_Health168C/achrecri.html: In Ethical Aerobics: ACHRE's Flight From Responsibility, four doctors argue that, while the ACHRE Report was fairly complete, the rights of the experimental subjects were largely ignored. Early on in the paper, they point out that neither patients nor patient representatives were on ACHRE. They then examine the remainder of the Report, ultimately concluding that AHCRE's presentation of the radiation testing was designed to absolve the U. S. government of responsibility for the experiments as much as possible.
http://www.brown.edu/Courses/Bio_Community_Health168C/consent.html: Michael Gipstein looks at the idea of informed consent in the ACHRE Report in his paper, The Historical Story of Informed Consent for Subjects of Radiation Experiments. He explores many specific examples of human experiments performed under AEC sanction, and is quick to point out the ethical lapses in each case.
http://www.yvwiiusdinvnohii.net/~nlthomas/political/sudradat.htm: Nancy Thomas maintains The People's Paths, a site dedicated to Native American issues. She includes this article about a lawsuit against the U. S. government on behalf of Native Americans living near the Hanford, Washington nuclear reactor. The suit claims that residents of this area were systematically exposed to ionizing radiation and later tested without their knowledge.
http://www.webcom.com/~pinknoiz/coldwar/: This page has a couple of useful documents about radiation testing. An excerpt from the Intermediate Report of ACHRE details radiation experiments conducted by the CIA. Dr. David Egilman's testimony about experiments conducted by the Department of Energy suggests that, just as in the Tuskegee experiment, treatment for radiation sickness was intentionally withheld from experimental subjects. Other documents here include a press release from the American Institute of Physics and some information on the Gulf War.
http://www.doe.gov/html/secretry/inside.html: Secretary of Energy Hazel O'Leary testified before the Senate Committee on Governmental Affairs in January, 1994. This excerpt from her testimony shows O'Leary doing her best to reassure Congress that, despite 40 years of announced experiments, the Department of Energy is doing its best to act ethically. O'Leary describes the drive to declassify documents about human radiation testing, and goes on to detail current testing, noting that "in no case is there any exposure of living human subjects to radioactive or chemical agents." At the end of this excerpt, O'Leary announces the creation of ACHRE, a committee with a focus on "ethical and scientific standards."
http://www.breakpoint.org/scripts/70114.htm: This is a transcript from the radio show BreakPoint, described by its web page as "Your Daily Guide to Developing a Christian Worldview in a Post-Christian Culture". Chuck Colson, the show's narrator, argues on 14 January 1997 that new FDA rules are essentially a step back to Nazi experimentation. New rules allow a doctor to try an experimental treatment on an unconscious patient without his or her consent. BreakPoint states that the new rule is the FDA "caving in" to researchers' complaints that it was too difficult to find patients willing to submit to experimental treatments and that it took too long to get an unconscious patient's family's approval to try a new treatment. Although its conclusions are somewhat extreme, BreakPoint's argument against the new rules does stand on solid moral and religious ground.
During the 50 years since World War II, the U. S. government consistently ignored the ethical standards it set at the Nuremberg Trials for human experimentation to try to press through its perceived testing needs without alarming the American public. Whatever the gains, the ethical lapses far outshadowed the possible benefits from the Tuskegee syphilis study and the various Atomic Energy Commission radiation experiments. While recent laws try to better preserve the concepts of informed consent and minimized risk, the threat of being experimented on against one's will still remains in the American system.