Case 2 The Dilemma of Tainted Data
One afternoon in the late 1980s, Howard Israel, a dental surgeon in New York, was gearing up to perform an operation. He was at his desk poring over his favorite anatomy text-the Pernkopf Atlas. The atlas includes elegant drawings of heads and jaws as well as every other part of the human body, both whole and dissected. Israel regularly reviewed illustrations of structures in the mouth and how they connect to one another before he operated on his patients.
A colleague strolled by. He noticed that Israel was looking at the Pernkopf Atlas. He asked, offhandedly, if Israel realized that some of the artists who had produced the pictures in the Atlas were Nazis and that some of the "models" used for the drawings probably were political prisoners and concentration camp victims.
Israel was stunned. He had no inkling of any of this. He had always relied on the Pernkopf Atlas and had never given a thought one way or another about its origins. At that moment, Israel's comfort in using the Atlas vanished. He began, along with other researchers, to question the process by which the Atlas had been created. For more than a decade now, Israel and others have been assembling and pressing for information on the editor, the artists, and the "subjects" of the Atlas.
The Pernkopf Atlas was produced in Austria before, during, and after World War II. Pernkopf was an anatomist, and he hired artists to sketch every feature of the human body. He was also the editor of a prestigious weekly medical journal-Wiener Klinische Wochenschrifft. He was a committed member of the Nazi (National Socialist) party, and his influence in the medical community increased just days after the Nazis conquered Austria in 1938. Pernkopf eventually was appointed president of the University of Vienna.
Current editions of the Atlas give no overt indication that the artists were affiliated with the Nazi party. But, in early editions, several artists incorporated Nazi symbols into their signatures. Two, for example, named Entresser and Trott, put double lightning bolts in place of the "ss" and "tt" of their names. Another, Lepier, drew swastikas inside his signature. Over the years, the publishers of the Atlas erased these symbols.
Israel and the other researchers discovered that cadavers of prisoners from execution chambers in Linz, Munich, and Prague were sent to the Anatomy Institute at the University of Vienna, where the Atlas was developed. They could not prove conclusively that these same cadavers were used for the Atlas, but that is highly likely.
In 1995, a formal request was made that the University of Vienna look into the source of the cadavers. By 1997, libraries and medical schools known to have copies of the Atlas received letters from the university indicating that an investigation was underway and that they would be told the outcome. The letter noted that "At present, the possibility cannot be excluded that individual preparations*, which were used for drawings in the anatomical atlas ? originate from (political) victims of the National Socialist regime. These were delivered by the ? District Court of Vienna. There is also a slight possibility that corpses were delivered from concentration camps ?"
[*samples of tissues or body parts for dissection that were taken from people who died or were killed]
By early 2000, the university had not yet sent out a final report.
The Pernkopf Atlas raises questions for contemporary doctors, researchers, artists, everyone. How should one react to data that are or may have been obtained unethically? Some argue that continued use of the Atlas allows some good to come out of the evil done during its collection. Others say that unethical data should be destroyed. They argue that allowing any good to be derived from past evil opens the door to future offenses, including unethical use of human beings.
- British Medical Journal, Dec 7, 1996, 313: 1463-1467.
- Journal of the American Medical Association, Nov 27, 1996, 276(20): 1633-1634.
- Letter from University of Vienna to libraries
- Video: The Long Way Home
- Video: In the Shadow of the Reich: Nazi Medicine
- U.S. Holocaust Museum (Washington, D.C.) http://www.ushmm.org/
- Other U.S. Holocaust memorials
- Website: http://www.aamc.org/research/primr/links.htm Public Responsibility in Medicine and Research
AimsStudents should understand the following:
- Prisoners in the camps and in the prisons never gave consent for their bodies to be used for the Atlas or for research
- Scientists have responsibilities to conduct experiments ethically and to collect data in ethical ways
- Those who use data have responsibilities to consider the sources of the data
- Use of anatomy textbooks in medicine
- Medical experiments during the Holocaust
- Informed consent
- Human dignity
Suggested Questions for Discussion
- When data are obtained unethically, what should be done? Why? If the data are used, should caveats be attached so that users will know their sources?
- What factors should users consider when they are confronted with data obtained from unethical treatment of humans and unethical experiments? How should people assess the data vis à vis the methods used in obtaining the data?
- As a medical professional or researcher, what information would you look for in the studies of others to assure yourself that data were collected ethically?
- As a subject in a study, what are your rights?
- What factors motivate medical researchers-altruism, fame, money, other?
- If you suffered from a disease and the key to the cure came from unethical medical research, would the ethics of the study matter to you? Would you deny yourself the cure?
- Is it ever possible to "un-know" something that you know but wish you had not learned?
Topics for Discussion/Written Assessment
- What honors the memory of the subjects of unethical experiments the most: using data or not using the data? Defend your position.
- In what ways, if any, do Pernkopf's political beliefs have a bearing on the merits of the Atlas? Is it possible to separate creative or intellectual work from the beliefs and politics of the persons who produce them?
- What responsibilities, if any, do scientists have when they use data collected in unethical experiments? Specifically, how should they measure, assess, use, and evaluate the data?
- Of what value are the data collected in unethical experiments? How should such experiments be cited?
- Is it possible to separate the results of research from the human suffering involved during the collection of the data? Even in situations in which no suffering is involved, where does the concept of human dignity factor into the collection and use of data?
Extension Questions for Additional Research
- The prisoners in the camps and prisons never gave permission for their bodies to be used for the Atlas or for research. What protections for human subjects have been put in place since World War II so that individuals cannot become subjects of research without their consent? How effective are these protections?
- At the time that Pernkopf was developing the Atlas, Nazi doctors also were doing cruel experiments on political prisoners and prisoners in the concentration camps. For example, they evaluated the effects of extremes of cold and pressure on the human body by testing how cold it had to be before someone would die, how little oxygen one could inhale and remain alive, and so on. The studies were done under the guise of helping the German army someday save pilots who might be shot down from high altitudes into icy waters. Should the results of these experiments be used and cited by contemporary researchers working in related areas?
- Outside the world of medicine, what examples can you think of in which data, information, or other resources (money, power) are obtained unethically or improperly? How does the example of the Pernkopf deliberations relate to these situations? In what ways, if any, can dirty money or tainted data or suspect resources be made "clean?" When if ever do worthy ends justify suspect means?
- What sorts of guidelines or laws exist for preventing future similar occurrences in medicine and elsewhere? What guidelines or laws should be developed?
- The U.S. government is developing guidelines for research that involves human embryos and stem cells, and much of the debate centers around how the tissues and cells are collected. What are the issues and what policies are under consideration?
- What other countries have carried out inhumane experiments on prisoners of war?
- Research other examples of creative and intellectual works that have been produced by people whose political and moral philosophies are widely considered to be odious.
Topics for Teacher Preparation
- Medical experiments and informed consent
- Government guidelines for medical research
- Medical experiments during the Holocaust
- Personal responsibility