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This essay touches far more on the issues of the politics of scientific research, bioethics, and treatment of human tissue and remains than on our revered sixteenth president. Nevertheless, it is another story about Abraham Lincoln; it concerns speculations about both his life and death, some based on fiction, some based on fact.

When I began the study, I thought it safe to assume that Abraham Lincoln knew nothing about his involvement with the DNA controversy. After all, he was assassinated in 1865, four years before the Swiss biochemist Johann Friedrich Miescher isolated for the first time the substance we know today as deoxyribonucleic acid, or DNA. It was not until 1944 that the significance of DNA as genetic material was understood. (Oswald T. Avery led the team of American biologists.) It was 1953 when Francis H. C. Crick and James D. Watson identified the double helix structure of DNA, thereby providing understanding of how genetic characteristics are maintained.

Imagine my surprise, then, when checking out of the local grocery store, I read the startling headlines on page 4 of the October 5, 1993, issue of Weekly World News: Abraham Lincoln's corpse had been revived with a miraculous new drug called Revivitol. According to special correspondent Beatrice Dexter, the mummified remains of the sixteenth president had been exhumed and taken to Walter Reed Army Medical Center for a "hush-hush experiment." After injection of Revivitol, according to Dexter, the dead man opened his eyes and was heard to say clearly, "Gentlemen, where am I?" According to the report, Lincoln was alive for ninety-five seconds, thereby experiencing firsthand the miracles of genetic manipulation. The purpose of the scientists' project, according to Dexter, was "to dramatize their work and win public support for the experiment." Page  [End Page 1]

Poster of "The Patient Is Abraham Lincoln"
symposium
Poster of "The Patient Is Abraham Lincoln" symposium Page  [End Page 2]

An earlier revelation about manipulation of Lincoln's DNA had been reported on page 27 of the December 3, 1991, edition of the Weekly World News. Ella Landry, "an excited secretary," was to deliver Abraham Lincoln's baby on January 6, 1992. It is uncertain whether Lincoln knew anything about this matter. Landry, the secretary from Baltimore, had responded to a newspaper advertisement for a "top-secret scientific project." She was impregnated with sperm cloned from DNA recovered from Lincoln's blood and bones.

Although Landry refused to reveal the identities of any of the two dozen doctors and geneticists involved in the hush-hush project or to reveal the location of their secret laboratory, those in the know knew such a miracle of modern science was possible only by "renowned researchers" at places like the Johns Hopkins University in Baltimore or the Armed Forces Institute of Pathology in Washington, D.C. The purpose of this project, according to the article, was to demonstrate that "we'll be able to produce duplicates of all our great people right and left." Landry was not clear whether she referred to handedness or politics; she did note, however, that this "was an underground experiment because a lot of people just don't approve of this sort of thing."

It is difficult even for experts to determine speculative spoof from hyped fact when it comes to the claims of modern genetic research. Little wonder then that both the media and the public greeted, with the whole range of human emotion, a proposal to test for DNA in the autopsy materials taken from Abraham Lincoln following his death in 1865.

Description of the Project

In a letter to the director of the Armed Forces Institute of Pathology, dated June 30, 1989, Darwin J. Prockop of Thomas Jefferson University Medical College in Philadelphia requested access to the Abraham Lincoln autopsy holdings in the National Museum of Health and Medicine. [1]

Prockop, director and chair of the Jefferson Institute of Molecular Medicine, is recognized as one of the pioneers in the study of genetics. He and his colleagues had been refining sensitive tests for detecting DNA and identifying genes associated with inherited Page  [End Page 3] disorders of connective tissue. In the process, they had developed means for testing DNA in specimens that had been stored for long periods of time. In his letter, Prockop expressed belief that washings from the roots of Lincoln's hair and a single milligram of bone should be more than enough to perform the experiment to see if President Lincoln had Marfan syndrome. If the experiment were successful, Prockop held out the hope of establishing a genetic library of Lincoln's genome. "Such a library," he wrote, "should obviously be of great interest as current efforts to map and sequence the human genome gather momentum."[2]

For many years it has been seriously debated whether Lincoln had Marfan syndrome, as well as other medical conditions.[3] Marfan syndrome, the most common inherited connective tissue disorder, "is inherited from parent to child in an autosomal dominant fashion," explained Marc Micozzi, director of the museum. "If the genotype is present it will be reflected in the phenotype (although there is variable expression) and the gene can remain hidden in one or more generations. However, in approximately 15 percent of cases the genetic defect is sporadic; it cannot be traced to a parental inheritance and probably results from a new spontaneous mutation." [4]

The most prominent clinical manifestations occur, Micozzi continued, "in the skeletal, ocular and cardiovascular systems due to weakness of the connective tissues. Affected individuals are prone to serious abnormalities and injuries of bones and joints, the lenses of the eyes and the heart, aorta, and major blood vessels."[5] The most obvious signs of Marfan syndrome are tall and gangly stature, often with gaunt facial features, and long arms, fingers, legs, and feet. Diagnosis has been problematic because of the extreme variability in each patient. These individuals often die young due to cardiovascular abnormalities.

Whether Lincoln had Marfan syndrome is of historic interest, however the question has been unresolvable based upon historical evidence. Therefore, some scholars and Lincoln devotees have expressed hope that new techniques of molecular biology and genetics will provide an answer based on scientific evidence. Page  [End Page 4]

The National Museum of Health and Medicine is a unit of the Armed Forces Institute of Pathology. Authorized in 1862 during the Lincoln presidency, the museum was the first national medical repository.[6] Since its founding, it and the institute have become the repository for nearly 2.3 million medical specimens obtained in the performance of medical, surgical, and pathological procedures. The institution truly is a national treasure of international stature.

The museum's holdings of Lincoln materials, according to announcements made at the time of the proposal, consisted of specimens of bone, blood, and hair collected as part of the Lincoln autopsy. "Then, as now, the autopsy was performed to establish the cause of death for a grief-stricken nation consumed with rumors about Lincoln's assassination," Micozzi explained. "Since the Army Medical Museum was the first (and, at that time, only) federal medical institution, its doctors were called upon to perform this sad task. Consequently, Lincoln's medical specimens—and those of other presidents—have passed into the collections of the Museum."[7]

After careful review of Prockop's request, the museum's staff prepared a proposal, approved by the board of governors for the Armed Forces Institute of Pathology, to organize consideration of the technical, ethical, and political ramifications of the proposal. A symposium and two panels of experts were organized.

The symposium on Lincoln's health was held in Washington, D.C., on February 9, 1991, supported by a grant from the American Medical Association. The event was well publicized and held in conjunction with Public Science Day of the American Academy for the Advancement of Science. One of the two presenters was Marc Micozzi, who is also a forensic pathologist and an anthropologist. He organized his presentation on the historical evidence of Lincoln's health, including the possibility of Marfan syndrome, in a manner that would be recognizable to modern clinicians: Lincoln's probable chief complaint, his history of health and illnesses, his review of systems, family history, and physical examination, including neurological and mental status examinations, as well as autopsy evidence. Micozzi explained that he could not reach a definitive conclusion about whether Lincoln had Marfan syndrome because available medical evidence is limited to the historical Page  [End Page 5] record. For him, and for many others, the opportunity to answer the question scientifically seemed possible through Prockop's promised techniques.

To address the possibility of whether the question could be answered scientifically, museum personnel assembled two panels of nationally recognized experts. Each panel was chaired by Victor A. McKusick, university professor of medical genetics at Johns Hopkins University and for many years director of its Division of Medical Genetics. The museum staff could have found no more prominent and internationally recognized expert on genetics. McKusick has been awarded many honors for his work, not only in the research laboratory but also for his humanitarian efforts on behalf of those afflicted with genetic defects.

The first panel was convened at the museum on May 1, 1991, and was charged by Cong. John Porter "to review the ethical, legal and social implications of conducting genetic tests on human medical specimens held by the Museum." The panel considered four questions and concluded that DNA testing for Marfan syndrome should be permitted. Further, the members recommended that the exploration of the technical aspects of the Prockop proposal should proceed.

The second panel of experts was convened a year later, on April 14 and 15, 1992. Its charge was to provide "a relevant scientific and technical review." The conclusions of the second panel were disappointing to those who, caught up in the hype of the proposal, had held high hopes for the project.

The following is an attempt to discern the hype from three perspectives: the panelists', the molecular researchers', and the bioethicists'. Conclusions about the viability of the project and the success or failure of the panelists' work depend, I suspect, on which perspective is given priority.

The Panelists' Perspective

Consideration of Prockop's request by the first panel of experts captured the attention of the national media. Opinion pieces and cartoons appeared in newspapers, and debates and jokes surrounding the panelists' work provided fare for talk shows on television and radio. Politicians were found both opining and dodging questions on the matter.

Members of the first panel were selected to provide a fairly broad spectrum of interests. The panel consisted of two seasoned experts Page  [End Page 6] in the management of museums, one Lincoln historian, the president of the National Marfan Foundation, and five physicians, two of whom had "cutting edge" expertise in genetics research.

The panel was presented with four questions. The first was, Is this proposal consistent with the best traditions of American scholarship and research? Yes, it is, a majority concluded, but they did not define in their report what they assumed were "the best traditions of American scholarship." However, the members did agree that a definitive answer about Lincoln's diagnosis is not "a major historical question." That left open a question for many commentators—Why bother?

The panel then considered the second question. Would the Prockop proposal violate Lincoln's privacy or his views on the disclosure of personal health and medical information? The report notes that although panelists did not know Lincoln's views about disclosure of personal health and medical information, no information suggests that the late president would not have consented. He had expressed great interest in science and what it had to offer for the betterment of humanity, and he was also concerned and curious at times about his health. Because of there being no live, lineal descendants, the panelists could see "no compelling legal argument to deny access to the samples."

Panelists noted that medical institutions, "specifically government medical institutions," have the ethical obligation to protect the privacy of medical information and tissue specimens from both the living and the dead. "Presidents and former Presidents of the United States have the same fundamental right to privacy ... as [does] the public in general." And, the panelists noted, "Exceptions to privacy with respect to medical information ... should only be made when there is compelling evidence [emphasis added] that the public good would be better served by disclosure." The panel did not define what would be compelling evidence, whether Prockop's proposal provided compelling evidence, or whether the proposal would meet the test for public good.

In publicity about the project before the panel was convened, a rationale for "public good" had been identified. It was said that those now with Marfan syndrome would find comfort if Abraham Lincoln, a national hero, could be shown to have been similarly afflicted. It was also reasoned that perhaps there would be less social ostracism and discrimination against them if the diagnosis could be confirmed. This rationale had not been part of Prockop's proposal. Page  [End Page 7]

Micozzi noted that precedence for testing specimens had been established more than thirty years before convening the panel, when Col. Joseph Akeroyd, M.S.C., U.S. Army, was able to identify President Lincoln's blood as Type A from bloodstains on the cuffs of Dr. Woodward, one of Lincoln's attending physicians. Further, the autopsy specimens had been on exhibit at the museum for several decades, suggesting that the line of Lincoln's privacy had already been crossed. Commenting on the panelists' conclusions, and drawing on contemporary biomedical debate, Micozzi observed that "without a living will and without legal heirs, the courts may attempt to reconstruct what the patient's wishes might have been, based upon evidence of the patient's attitudes, beliefs and behaviors in related matters." [8]

Nevertheless, the panel generalized, arguing from the particular of the Lincoln question: "Proposals to conduct DNA testing of tissue from deceased persons in museum collections should be permitted, if at all, only after (1) appropriate review with lineal descendants, and (2) careful analysis of whether on balance a public good outweighs the invasion of privacy inherent in testing." The suggestion placed curators on notice that, if human tissue is to be acquisitioned into their collections, they must obtain prior permission for use of the tissues. Left unanswered is what curators are to do about materials acquisitioned before this question was posed.

The third question addressed by the panel was the museum's obligations to its collections: "Is it acceptable for a museum to allow specimens of great historic value to be destructively tested if a compelling public interest is served by doing so?" Despite the fact that the panelists had not established any compelling social good or public interest in Prockop's proposal, they were pushed to address the question. A majority of the panelists describe their deliberations as pressured at this point in order to meet the scheduled press conference later that afternoon.

Prockop's proposal would require destruction of irreplaceable material. How would that square with the fundamental purpose of the museum: "To collect, conserve and preserve medical materials while making them available for research and educational purposes"? How the panel answered would establish precedence for museums that hold medical specimens of historic figures. Page  [End Page 8]

Panelists caught the dilemma by noting that "at times preservation, research, and the end result of interpretation may collide with one another." Rather than following precedence for such dilemmas in medical research, which I will address later, the panelists fell into the impossible hole of making a recommendation based on erroneous premises. "In the instance of Lincoln material, the report reads, "only 10 percent or less of the samples may need to be used, leaving an adequate amount of the remains to be examined if future technology makes that process more meaningful." In fact, the amount of available material is less than one gram. A minimum of five grams, and perhaps as much as ten grams, would have been necessary to perform the DNA test. "Furthermore," the report continued, "the genetic [emphasis added] information contained in the samples is not destroyed in the process of testing, but amplified greatly." Perhaps the genetic information would not be destroyed, but any other possible information would because the technique would require pulverizing the bone fragments. Both premises upon which the panel answered this question were erroneous. The implications would become evident in the report of the second panel, which was convened a year later.

The fourth question posed for the first panelists was, "Is this proposal consistent with the prevailing standards of professional ethics in the disciplines of science and history?" The answer was, "Yes." The final conclusion of the panel was that "exploration of the technical aspects of the Lincoln DNA Marfan study be encouraged to proceed. Meanwhile, the ethical guidelines on DNA testing are continuing to be developed and must be considered before a final decision on whether to proceed with analysis of Mr. Lincoln's DNA."

A minority of the panelists recall feeling the heavy hand of McKusick, particularly at the press conference held in the Lincoln Room of Sen. Mark Hatfield on the afternoon of May 2. Rather than convey the tenuousness of their conclusions or the dilemmas posed by the Prockop proposal, McKusick spoke with certitude about the science the project would prove.

The public was left to wonder why the panel should recommend further consideration if Prockop's question was not a "major historical question," the pursuit of the proposal should be approved only if there were "compelling evidence that the public good would be better served," and such evidence was not agreed upon. A majority of panelists report that they felt there had been a hidden agenda to their considerations. Because of that feeling, they had Page  [End Page 9] insisted that the report be concluded with the promise that "the ethical guidelines on DNA testing [should] continue to be developed and must be considered before a final decision on whether to proceed with analysis of Mr. Lincoln's DNA."

The findings of the second panel, convened a little over a year later, were to build on the conclusion of the first panel, that is, that "it is possible and appropriate to study available Lincoln tissue to ascertain whether [Abraham Lincoln] in fact had Marfan syndrome."

The second panel was also chaired by McKusick. All but one of the panelists were physician researchers; the lone exception was the president of the National Marfan Foundation. The group needed to account for changes that had occurred since the first panel had presented its conclusion the year before. The most serious change was that Prockop's candidate gene, fibrillin, had been found not to provide the hoped for conclusive evidence. Other mutations could account for the disease. Therefore, the second panel quickly concluded that "it is premature to go forward" with the tests. It also concluded that the method for testing, that is, DNA amplification by polymerase chain reaction (PCR), still needed to be improved in order to analyze DNA from historic materials.

Nevertheless, because more complete knowledge of the human genome "will become feasible in the near future," the second panel of experts made several recommendations.

  1. The museum should take steps to ensure that the Lincoln medical samples in its collections "are maintained in a manner that would preserve any DNA in its present state."
  2. The National Marfan Foundation and the National Museum of Health and Medicine "should coordinate efforts to acquire other samples that may have derived from Lincoln."
  3. "A small sample of the Lincoln material should be studied now for the purposes of assisting in authenticating blood and hair samples claimed to be those of Lincoln that exist outside the museum."
  4. It is appropriate to test mitochondrial DNA on a few shafts of hair to establish a basis for authenticating the identity of Lincoln material."
  5. "Pilot studies for this project should analyze material of similar age and preservation," such as materials from the Civil War period.
  6. 6. "Any laboratory involved in this study must adhere to the highest technical standards and respect the ethical guidelines established by the museum." Page  [End Page 10]

The final paragraph of this second report seems to address criticism from both prominent physicians and columnists who challenged the validity of the hypothesis that Lincoln had Marfan syndrome and questioned whether there is a "compelling public interest to be served by the proposal," the premise upon which the entire project rested. These critics also believed that the way the project had been handled was, in fact, misleading victims of Marfan syndrome. The report concludes, "It is of the utmost concern to this panel that our deliberations and advice concerning the study of Lincoln's DNA not be misconstrued by the public, especially persons at risk for or affected by Marfan syndrome and their physicians. For the present, the diagnosis of Marfan syndrome is established by detailed family history and physical examination, along with other medical tests; not by DNA analysis."

Nevertheless, from the perspective of both groups of panelists, even considering all the ambiguities, dilemmas, and contradictions, Prockop's proposal was worthy of consideration and pursuit.

The Researchers' Perspective

Around the time that Prockop was making his proposal, Congress was authorizing funds for the Human Genome Project. Under the auspices of the National Institutes of Health and the Department of Energy molecular biologists launched a project comparable to the U.S. space program in its scope and expense (a projected $3 billion over a fifteen-year span). This was one of the largest commitments ever made to a scientific discipline or a single project. Genetics researchers across the country jockeyed to be part of the project.

The first director of the National Center for Human Genome Research was the Nobel laureate James D. Watson, who, with Francis Crick, had first described the double helix structure of DNA in 1953. Under Watson's direction, the purpose of the project was to attempt mapping and sequencing the DNA of a human prototype.[9] However, the project, now under its new director, Francis S. Collins, has been refocused to mapping genomes of individuals, thereby raising hopes that the project will provide clinical applications for predicting risk for inherited diseases and dysfunctions.[10] Page  [End Page 11]

Somewhere on the twenty-four chromosomes in each of our cells are one hundred thousand genes for normal proteins. Each one has the potential for genetic defects that cause more than three thousand inherited diseases. Thus far, scientists have identified the genes responsible for more than three hundred diseases. Although most are rare, some are increasingly common, for example, Alzheimer's disease, breast cancer, cystic fibrosis, Duchenne muscular dystrophy, familial adenomatous colon cancer, familial high cholesterol, fragile X syndrome, hereditary nonpolyposis colon cancer, Huntington's disease, Lesh-Nyan syndrome, neurofibromatosis, retinoblastoma, severe combined immunodeficiency (ADA), Tay-Sachs disease, and Wilms' tumor.

There is a test for any disease for which a gene has been identified, but in practice only a few tests are available to the public. Most are still imperfect and are reserved for research purposes only, although they may become available in the future.

Many people do not realize the struggle involved for any researcher, particularly those in the newer sciences, to obtain the extensive resources necessary to do their work. Most researchers at the Johns Hopkins University, for example, must raise both their own salaries and those of their staff through competitive means. Hopkins, like the rest of the research universities and institutes in the United States, relies heavily on political clout to obtain and maintain levels of funding from all sources, particularly from the federal government. Senior researchers in particular vie for the prestige with which to leverage new grants and contracts.

No medical technology has been received in modern history with any more expectation and hype than molecular biology. From the perspective of many molecular biologists, all our health conditions are linked to genes. A wholly new industry is being built on hopes of better living through genetics. Every aspect of genetic research is matched by entrepreneurs seeking to capitalize on each announcement about identification of a chromosome's function, even when evidence to support application is often slight or nonexistent. Almost daily, there are revelations about how bright hopes lead influential scientists to violate even the basic tenets of scientific research.

Although it is important to honor the positive contributions that genetics and biotechnology are making, we also need a realistic sense of the risks inherent in the science, its applications, and its commercialization. Ruth Hubbard, the first woman scientist tenured at Harvard University and professor of genetics there, writes that "it is crucial that we, as citizens, not leave [biotechnology] in Page  [End Page 12] the hands of 'experts.' Like other people, she notes, "Scientists are interested in seeing their projects flourish, and their enthusiasm can blind them to the possible negative effects of their work." Because we will all have to live with those effects, "We must become sufficiently informed to be able to decide to what extent genetics and biotechnology can improve our lives. We cannot just sit by as passive worshipers or victims."[11]

Rather than being a simple proposal for finding DNA in Abraham Lincoln's autopsy materials and testing for the gene responsible for Marfan syndrome, Prockop's proposal to the National Museum takes on a different look within the context of promoting genetics research.

A basic principle of science, established in the nineteenth century with the rise of the laboratory disciplines, is that the method used in an experiment must permit the hypothesis to be proven in ways in which bias can be identified and controlled. Poor design and sloppy techniques are not bad science but nonscience. Would the methods Prockop proposed permit the hypothesis to be proven either valid or invalid?

All references to the Prockop proposal I have been able to find presume—indeed, leave unquestioned—that the holdings of the museum are from Abraham Lincoln. It is as though the materials came straight into the museum's holdings directly from the autopsy table. In fact, the bone, hair, and blood-stained cuffs from Edward Curtis, the doctor performing the autopsy, did not come into the museum's collections until September 12, 1947, as a gift from Bridgham Curtis. [12]

Most cells of every living creature have two kinds of DNA. DNA found in the nucleus is in the form of chromosomes and is a mixture of DNA from both parents. It is chromosomal material that would be necessary to answer the question about Lincoln and Marfan syndrome. Little ancient material can provide this kind of DNA. The second McKusick panel recognized the improbability of Page  [End Page 13]


 Lincoln specimens. Fragments of the bone and strands of hair from
site of the gunshot wound to the head, surrounded by the
blood-stained shirt cuff of Dr. Edward Curtis. Note the probe Dr.
Curtis used to locate the bullet. (The National Museum of Health
and Medicine)
Lincoln specimens. Fragments of the bone and strands of hair from site of the gunshot wound to the head, surrounded by the blood-stained shirt cuff of Dr. Edward Curtis. Note the probe Dr. Curtis used to locate the bullet. (The National Museum of Health and Medicine) Page  [End Page 14]
there either being the technology to find chromosomal DNA or of there being sufficient material to test. They recommended testing for mitochondrial DNA.

DNA found floating in the cell outside of the nucleus is called mitochondrial DNA (mtDNA) and is the energy source of a cell.[13] Mitochondrial DNA is identical only to the mtDNA of the mother. Identification of genetic material is possible when there is direct comparison of mtDNA obtained from provable maternal relatives (one of the crucial steps, by the way, used at the Armed Forces DNA Identification Laboratory for confirming identity of battle casualties from deteriorated remains). Because we cannot be confident that we are actually working with material from Abraham Lincoln, successful testing would require comparison with material authenticated from his mother's lineage. No museum is known to possess such material.

The second McKusick panel seems, from the very beginning of its deliberations, to have confused technology—the tools, even playthings, of scientists—with the scientific method. The appropriate question with which to begin consideration of Prockop's proposal should have been whether the method—not the technology—exists to permit proving or disproving the hypothesis of the experiment, in this case, the existence of Marfan syndrome in the materials identified as Abraham Lincoln's.

Dorothy Nelkin notes that it is no less amazing that certain scientists, who have paid little attention to communicating with the public, now worry about their public image and try hard to communicate the excitement and benefits of their research. "They see gaining visibility through the media as crucial to securing support and assuring favorable public policies toward science. Researchers mapping the human genome," she continues, "are particularly concerned about their public image, both to assure the continuity of public financing for their long-term, costly project and to counter the negative images of genetics stemming from its historical association with eugenics and social Darwinism." Nelkin, the author of Selling Science: How the Press Covers Science and Technology (1988), asks, "Do the images disseminated by geneticists inform the public accurately and fairly about this complex field?"[14]

Reviewing the metaphors geneticists often use to describe their work, she finds three related themes: "a definition of the gene as Page  [End Page 15] the essence of identity and the basis of human differences; a promise that genetic research will enhance prediction and allow control of behavior and disease; and an image of the genome, the exact chemical sequencing of genes, as a text that will define a natural order." Increasingly, geneticists refer to the genome as "the Bible, the Holy Grail, or the Book of Man ... a sort of secular text that will define the natural and moral order. In the interest of public understanding, ... scientists should restrain their tendencies to oversell their work and consider the biases and beliefs that will ultimately shape the use of a powerful science—one that offers prospects for promising applications, but that also opens possibilities for pernicious abuse."[15]

From the perspective of the research context of the time, Prockop's proposal seems to presume that the autopsy remains of the most revered American should be used to promote the most promising of all medical sciences. Even so, does the method of the proposal allow proof or disproof of the hypothesis that Abraham Lincoln had Marfan syndrome? We now know that the gene Prockop proposed to find in the Lincoln materials is not the only gene associated with Marfan syndrome. The test, had it been authorized, would have required far more material than the one gram of bone and hair held by the National Museum. Those materials would have been irreparably lost because of a faulty proposal.

Even though no panelist seems to have challenged the authenticity of the museum's holdings, the autopsy material did not come into the collection until 1945. Even if it were possible to authenticate the autopsy remains, there is no way of guarding against contamination before the test. The technology of mitochondrial DNA is so sensitive that the body oil from the finger of a careless curator would alter the findings. This opens the challenge to the researchers' perspective, that Prockop's proposal would provide no more certainty than any other hypothesis based on historical, as opposed to scientific, data. This frames a third perspective for understanding the Lincoln DNA controversy.

The Bioethicists' Perspective

Since revelations of human subject abuse during the 1960s, the standard by which research in the United States is to be measured begins with the question, "Does the proposal use the scientific Page  [End Page 16] method? Can the means of testing to be used to prove or disprove the hypothesis?" If the answer is no, or in doubt, the proposal is inherently flawed and therefore unethical. Almost all scientific and scholarly associations and most scholarly journals adopted this standard in the 1980s. [16]

Scholars are equally concerned about the abuse by governmental agencies of research that violate the principles of the Bill of Rights. It is no longer esoteric knowledge that the American government, until very recently, protected scrutiny of many of the unethical and inhumane research projects on human subjects performed by the Axis governments during World War II—the Third Reich of Germany, Italy, and Japan. [17] At the very time the Allies were conducting the Nuremberg trials that condemned the so-called Nazi doctors, taxpayers unknowingly supported medical research in the United States that was secretly being conducted on U.S. citizens who were vulnerable because of age, mental handicap, or poverty.

Regardless of their political persuasions, historians have and must continue to show that the federal government, scientific communities, research universities, and even the medical profession fail to warrant a citizen's trust in research unexamined and unsupervised regardless of rationale. As medical historian and physician Michael H. Kater wrote to a German audience in Die Zeit, "One has to accuse the Americans of not wanting to draw any consequences from the crimes of the Nazi doctors of Nuremberg. However that may be, the fact is, even in a democracy, the state is able to bend or completely abolish scientific and ethical norms without the knowledge of the normal citizen."[18]

Even where scientific and ethical standards are followed faithfully, there are serious questions about how individuals and society can and will handle new information obtained through molecular biology. One question concerns how to keep test results confidential in an age when medical records are vulnerable to public scrutiny. Another is the chance that genetic tests will turn the health-insurance Page  [End Page 17] industry upside down. Instead of insuring people against unexpected illness, access to health insurance will be limited to genetic probabilities. Identification of defective gene carriers are vulnerable to abuse by the military, private employers, and even one's own family members. Another difficulty presented by genetic tests is a shortage of trained counselors who can talk to patients about the pros and cons of genetic tests and explain what the results mean.[19] Genetic tests may also exacerbate controversies over the best preventive care for particular diseases. For example, should young women at risk for breast cancer opt for mastectomies even before diagnosis? Should young men at risk for Marfan syndrome alter their life-style?

From this context, one must raise the possibility that the McKusick panels did not address the right questions. Like the proverbial man questioned about whether he had stopped beating his wife, the panelists' considerations were inherently flawed by the control of the questions to which they were limited. They did not consider the questions appropriate to the issues.

Most institutions are required, as a condition of receiving federal research money, to review all studies employing human subjects to ensure that the subjects, whenever possible, are provided the informed consent and that the risks of the research are proportionate to its opportunity for potential benefits. Those benefits do not give first priority to the scientists' desires or to the goals of institutions in which the research is to be performed.

Conclusion

Prockop's proposal was to look at the wrong gene, with the wrong method, and in questionable specimens. Using the standards of biomedical considerations of that time, the proposal was not consistent with the prevailing standards of professional ethics in either the disciplines of science or history.

Although the panelists' work could be judged a failure from two contexts I have discussed, there were successes. Prockop had been a candidate for president of a prestigious organization at the time he made his proposal. He was elected. Page  [End Page 18]

The National Marfan Foundation, a little-known organization concerned with a little-known disease, gained considerable recognition and was the recipient of a large increase in donations.

McKusick, who has been tireless in lending his prestige to genetic research, was given a national platform for promoting further funding of the National Genome Project at a time of severe restraints on the national budget.

The National Museum of Health and Medicine, stuck in the basement of Building 54 at Walter Reed Medical Center, became much better known at a time when political advantage was important for future return to the Mall in Washington, D.C.

Collectors of Lincoln materials saw their possessions appreciate in value when there was hope that scientific evidence could bolster historical provenance for authenticity of their holdings.

Sufferers of Marfan syndrome gained recognition for their circumstances and, so it was argued, were given the greatest of American heros, whether the Lincoln connection was proven or not.

The controversy over the use of autopsy material from Abraham Lincoln by the National Museum of Health and Medicine amply illustrates that not only is no artifact without its story and context, but also that no museum exhibit, symposium, or publication is without its presuppositions and too often its hidden political agenda.[20] With regard to the Prockop proposal, Jeremy Rifkin of the Foundation on Economic Trends is regarded as accurate even by some of his harshest detractors. "The scientists involved in this study," he asserted, were trying to use the "corpse of a revered President of the United States for a public relations stunt to draw attention and research funds for a particular disease."[21]

To some, the controversy about use or abuse of autopsy materials from Abraham Lincoln may indicate nothing more than the continuous hucksterism that has surrounded Lincoln even when he lived. But one new direction in research studies, including Lincoln studies, is the imperative to consider the context of values. The old assumption that research can be value-free is dead.

There are some heroes in the affair. They are the director and the curators of the National Museum of Health and Medicine, who, like their colleagues in many other museums and archives, when forced by the powerful and the hurried, asked questions about what was Page  [End Page 19] proposed, what methods were to be used, and was purposes would be served. I believe that Marc Micozzi is correct when he says that had Prockop's proposal been answered with a straight-out "no," the museum's personnel could have been accused of hindering the very kinds of research for which the institution was established. Had the proposal been approved with an unqualified "yes," irreplaceable damage would have been done to the Lincoln remains, and the methods used could not have answered the hypothesis about Marfan syndrome.

The museum now should be freed to organize systematic consideration of the issues, questions, and procedures that all institutions holding human remains face. Only after credible standards are established for research involving human remains should we return to the question of Abraham Lincoln's DNA.

Those with little interest in the genetic cause and control of Marfan syndrome but still seeking good news about the miracle drug Revivitol should know that it is not an elixir but a process. In order to be resurrected after 126 years of moldering in the grave, as Abraham Lincoln supposedly was, here is what to do: Start with a photograph of an Egyptian mummy from the fifteenth century B.C.E. Have a photograph taken of your face area, preferably by the University of Pennsylvania. Pay $250 for a copy. Then take air brush and use computer enhancement. By this means—also used by the Weekly World News—you, too, can be revived and be the genome of your choice.

Interviews Conducted for This Study

Col. Vernon Armbrustmacher, director, Armed Forces Institute of Pathology
Cullom Davis, Ph.D., professor of history, Sangamon State University, Springfield, Illinois, and senior editor, Lincoln Legal Papers Project
Alan Hawk, historical collections manager, National Museum of Health and Medicine, Armed Forces Institute of Pathology
Richard Levenson, director public relations, National Museum of Health and Medicine, Armed Forces Institute of Pathology
Marc S. Micozzi,. M.D., Ph.D., director, National Museum of Health and Medicine, Armed Forces Institute of Pathology
Lawrence C. Mohr, M.D., White House physician, retired
Mark Neeley, Jr., Ph.D., John Francis Bannon professor of history and American studies, St. Louis University Page  [End Page 20]
Adrianne Noe, Ph.D., National Museum of Health and Medicine, Armed Forces Institute of Pathology
Timothy O'Leary, M.D., chair, Department of Cellular Pathology, Armed Forces Institute of Pathology, Walter Reed Army Medical Center
Maj. Victor Walter Weedn, M.D., J.D., chief deputy medical examiner and chief, DNA Identification Laboratory, Armed Forces Institute of Pathology

Appendix A

On May 1, 1991, the National Museum of Health and Medicine convened the first of two panels to consider the "ethical, legal and social implications of conducting tests on human medical specimens held by the museum." Members of the panel were:

Victor A. McKusick, M.D., chair of the committee, University Professor of Medical Genetics, Johns Hopkins University School of Medicine

Edward Alexander, former president, American Association of Museums

Cullom Davis, Ph.D., professor of history, Sangamon State University, Springfield, Illinois, senior editor, Lincoln Legal Papers Project

Lawrence C. Mohr, M.D., White House physician, retired

Timothy O'Leary, M.D., chair, Department of Cellular Pathology, Armed Forces Institute of Pathology, Walter Reed Army Medical Center

Lynne Poirier-Wilson, the Strong Museum, Rochester, New York

Phillip Reilly, M.D., Ph.D., executive director, the Eunice Kennedy Shriver Center

Maj. Victor Walter Weedn, M.D., J.D., chief deputy medical examiner and chief, DNA Identification Laboratory, Armed Forces Institute of Pathology

Cheryl Williams, president, National Marfan Foundation

Advisory Statement by the Panel on DNA Testing of Abraham Lincoln's Tissue, May 1, 1991 [on File at the National Museum of Health and Medicine, Washington, D.C.]

A. Is this proposal consistent with the best traditions of American scholarship and research?

Yes. The panel does not think that a definitive answer as to Lincoln's diagnosis is a major historical question. Nevertheless, given Lincoln's place in history any new fact about him is noteworthy. Further, the health of presidents in general and the specific question of whether Lincoln had the Marfan syndrome have been much discussed already.

Beyond the legal questions, however, is the ethical question of whether or not a portion of Lincoln's remains should be used to amplify and clone genetic material for the purpose of postmortem testing. There are several matters of concern in this regard:

Medical institutions, specifically government medical institutions, have an ethical obligation to protect the privacy of medical information and tissue specimens from both living and deceased individuals of which they have custody.

Presidents and former presidents of the United States have the same fundamental right to privacy of medical information and tissue specimens as the public in general.

Exceptions to privacy with respect to medical information and tissue specimens should only be made when there is compelling evidence that the public good would be better served by disclosure.

B. Does this proposal violate Lincoln's privacy or his views on the disclosure of personal health and medical information?

The committee does not know Lincoln's view of the disclosure of personal health and medical information, and it knows of no evidence that clearly argues that Lincoln would, if able, consent to or oppose the test under consideration.

The committee does not believe that the proposed test is a legal violation of the privacy of the deceased president. From a legal perspective the privacy interest is extinguished at death. It is true that special considerations may apply to medical records of a deceased person, but, even so, given that Lincoln has been dead for 126 years, has no lineal descendants, and is an uncommonly important historical figure, the committee sees no compelling legal argument to deny access to the samples.

The panel notes that the testing proposed involves blood and tissue samples such as were used in standard clinical diagnosis and that the examinations would be performed in a manner that does not diminish the dignity of the subject.

The panel states in the strongest possible terms that when it concludes that legally Lincoln's privacy would not be violated by conducting this test, it in no way implies that among living persons genetic test data requires any less of a privacy cloak than other medical information. To the contrary, the committee concludes that the privacy interest of living persons (including prominent public figures) necessitates that except under most unusual circumstances those individuals have complete authority over the acquisition and dissemination of DNA test data.

In addition, the committee suggests that proposals to conduct DNA testing of tissue from deceased persons that is in museum collections should be permitted, if at all, only after: (1) appropriate review with lineal descendants, and (2) careful analysis of whether on balance a public good outweighs the invasion of privacy inherent in testing.

C. Is it acceptable for a museum to allow specimens of great historic value to be destructively tested if a compelling public interest is served by doing so?

Museums have a unique responsibility to preserve objects over the long term. Inherent in their overall mission, however, is the responsibility for research on those objects so that information about them may be disseminated to the public for which they hold the objects in trust.

At times preservation, research, and the end result of interpretation may collide with one another. It is not uncommon for museums to take minute amounts of paint, wood, or fiber from objects to test for such things as originality, composition, or color. This testing requires the removal of those minute amounts from the original objects and thereby implies a very small loss to the objects. What information may be returned from such testing adds to the overall information on the objects themselves and allows for fuller research and clearer, more honest interpretation.

The panel recognizes that this statement is related to the objects in history, decorative art, and art museums—manufactured or crafted material, not the remains of human beings. Specifically, the National Museum of Health and Medicine is unique among museums; it is a medical institution charged with the preservation of medical information.

In the instance of Lincoln material, only 10 percent or less of the samples may need to be used, leaving an adequate amount of the remains to be examined if future technology makes that process more meaningful. Furthermore, the genetic information contained in the samples is not destroyed in the process of testing, but amplified greatly.

The panel emphasizes that it has rendered an opinion on Lincoln DNA studies only in relation to the Marfan syndrome and in response to a specific research proposal. Proposals for other research use of the Lincoln DNA would require separate scrutiny and judgment.

D. Is this proposal consistent with the prevailing standards of professional ethics in the disciplines of science and history?

Yes. The committee advises the museum that it is permissible to allow scientists to perform DNA testing on a small fragment of Lincoln tissue to ascertain if he had Marfan syndrome.

The panel strongly believes that such testing should be undertaken only after much preliminary work has defined the major genetic mutations that cause Marfan syndrome. Consistent with the best scientific traditions, testing should be done through a process that allows several competent laboratories to propose protocols. Any DNA extracted and amplified from the sample should remain the property of the museum, which should maintain control of its use and disposition.

The committee's conclusion is not intended as a generic recommendation that it is permissible to test the remains of dead public figures for genetic and other disorders.

The committee believes that careful investigation of whether Mr. Lincoln had Marfan syndrome may help counter problems of genetic discrimination in our society and will enhance the self-esteem of persons who are carriers of the Marfan syndrome and other disabling conditions.

The final conclusion of the panel is that exploration of the technical aspects of the Lincoln DNA Marfan study be encouraged to proceed. Meanwhile, the ethical guidelines on DNA testing are continuing to be developed and must be considered before a final decision on whether to proceed with analysis of Mr. Lincoln's DNA.

Appendix B

On April 14–15, 1992, the National Museum of Health and Medicine convened a second panel to review the scientific issues concerning the feasibility of testing available Lincoln materials for mutations within the fibrillan gene. Members of the panel were:

Victor A. McKusick, M.D., chair of the committee, University Professor of Medical Genetics, Johns Hopkins University School of Medicine.

Michael Braun, Ph.D., director, Laboratory of Molecular Systematics, Smithsonian Institution

Peter Byers, M.D., professor of pathology and medicine, University of Washington School of Medicine

Henry Erlich, Ph.D., senior scientist and director, human genetics, Roche Molecular Systems, Inc.

Steven Hausman, Ph.D., deputy director, National Institute of Arthritis and Musculoskeletal and Skin Diseases.

Lawrence Mohr, M.D., White House physician [did not attend]

Phillip Reilly, M.D., J.D., executive director, the Eunice Kennedy Shriver Center

Maj. Victor Weedn, M.D., J.D., chief deputy medical examiner and chief, DNA Identification Laboratory, Armed Forces Institute of Pathology

Cheryl Williams, president, National Marfan Foundation

Advisory Statement by the Panel on DNA Testing of Abraham Lincoln's Tissue, April 15, 1992 [on File at the National Museum of Health and Medicine, Washington, D.C.]

After reviewing the state of knowledge concerning the specific mutations that have been found in cases of Marfan syndrome, the committee concludes that it is premature to go forward with testing of Lincoln material for the Marfan syndrome at this time. The reasoning was as follows:

  1. There is still much to learn about the fibrillin gene. It is essential that we have more detailed knowledge of the gene's sequence and structure. Equally important is an understanding of the full range of mutations that cause the Marfan syndrome before the testing of the Lincoln material should proceed.
  2. While the current genetic techniques for DNA testing appropriate for this analysis, such as DNA amplification by the polymerase chain reaction, or PCR, are well developed, some improvements in the ability to recover and analyze DNA from historic materials are anticipated.

Nevertheless, it is likely that testing Lincoln material will become feasible in the near future. Recognizing this possibility, the committee recommends:

  1. The museum take steps to ensure that the Lincoln medical samples in its collections are maintained in a manner that would preserve any DNA in its present state.
  2. Although beyond the scope of responding to the initial research request, the National Marfan Foundation and the National Museum of Health and Medicine may wish to consider the following. It would be appropriate for representatives of the museum and the National Marfan Foundation to coordinate efforts to acquire other samples that may have derived from Lincoln.
  3. That a small sample of the Lincoln material in the museum's collections should be studied now for the purposes of assisting in authenticating blood and hair samples claimed to be those of Lincoln that exist outside the museum. This is important because the amount and quality of DNA in the Lincoln samples held by the museum may be inadequate to allow for determination of whether Lincoln had Marfan syndrome. If a genetic profile of the Lincoln DNA can be established from the museum's holdings, it can be used to authenticate other material which has a reasonable likelihood of having been derived from him. If other material can be authenticated, then there will be a greater amount of testable genetic material and the research is facilitated.
  4. It is appropriate to test mitochondrial DNA in a few shafts of hair to establish a basis for authenticating the identity of Lincoln material. Hair shafts are not likely to contain the nuclear DNA that would be needed to ultimately test for Marfan syndrome. There is a much greater likelihood of obtaining mitochondrial DNA rather than nuclear DNA from hair shafts. Mitochondrial DNA is found outside the cell nucleus and is present in many, many copies in all cells. It is often possible to recover mitochondrial DNA from historic sources including hair.
  5. Pilot studies for this project should analyze material of similar age and preservation (e.g., samples from the Civil War held in numerous collections).
  6. Any laboratory involved in this study must adhere to the highest technical standards and respect the ethical guidelines established by the museum.

In conclusion, it is of the utmost concern to this panel that our deliberations and advice concerning the study of Lincoln's DNA not be misconstrued by the public, especially persons at risk for or affected by Marfan syndrome and their physicians. For the present, the diagnosis of Marfan syndrome is established by detailed family history and physical examination, along with other medical tests, not by DNA analysis. DNA analysis is currently used for investigating the molecular basis for Marfan syndrome, not yet for diagnostic purposes.

Notes

  1. Darwin J. Prockop, M.D., Ph.D., Jefferson Medical College, Philadelphia, to Dr. Robert Karnei, director, Armed Forces Institute of Pathology, Washington, D.C., June 30, 1989, on file at the National Museum of Health and Medicine, Washington, D.C.return to text
  2. Prockop to Karnei, 2.return to text
  3. John K. Lattimer, "The Danger in Claiming That Abraham Lincoln Had the Marfan Syndrome," presented to the Lincoln Fellowship of Wisconsin, Madison, Wisconsin, April 8, 1990, repr. in Historical Bulletin 46 (1991): 38–47. return to text
  4. Marc S. Micozzi, "When the Patient Is Abraham Lincoln," Caduceus: A Museum Journal for the Health Sciences 7 (Spring 1991): 35.return to text
  5. Micozzi, "When the Patient Is Abraham Lincoln."return to text
  6. William A. Hammond, who received his commission on May 21, 1862, as surgeon general from Abraham Lincoln, established the museum as part of his attempts to reform the old Army Medical Group, which was not effective. return to text
  7. Micozzi, "When the Patient Is Abraham Lincoln," 36.return to text
  8. Ibid., 39.return to text
  9. Ruth Hubbard and Elijah Wald, Exploding the Gene Myth: How Genetic Information Is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators, and Law Enforcers (Boston: Beacon Press, 1993), 3. return to text
  10. Dorothy Nelkin, "The Grandiose Claims of Geneticists," Chronicle of Higher Education, March 3, 1993, B1–2.return to text
  11. Hubbard and Wald, Exploring the Gene Myth, xiii–xiv.return to text
  12. On the curatorial note, Bridgham Curtis is listed as the son of Dr. Edward Curtis. Also part of the note is evidence that Dr. Curtis did not keep the autopsy samples with intent. He found the bone fragment while cleaning an instrument and presumed them to be those of the slain president. The hair samples came from Mrs. J. K. Barnes on November 4, 1899 and from Mrs. George Sternberg on June 4, 1920. There are only two locks of hair officially acquisitioned into the collection. A third lock is marked as Lincoln's, but the staff does not know where it came from or whether the two locks classified as officially part of the collection could ever have been mixed with the unofficial specimen. return to text
  13. Armed Forces DNA Identification Laboratory staff, "Mitochondrial DNA: How Is It Used to Identify Human Remains?" on file at the AFDIL.return to text
  14. Nelkin, "The Grandiose Claims of Geneticists," B1.return to text
  15. Ibid., B2.return to text
  16. Ruth Ellen Bulger, Elizabeth Heitman, and Stanley Joel Reiser, eds., The Ethical Dimensions of the Biological Sciences (New York: Cambridge University Press, 1993).return to text
  17. Robert N. Proctor, Racial Hygiene: Medicine under the Nazis (Cambridge: Harvard University Press, 1988), see also Sheldon H. Harris, Factories of Death: Japanese Biological Warfare, 1932–1945, and the American Cover Up (New York: Routledge, 1994).return to text
  18. Michael H. Kater, "Der Buchenwaldgeruch," Die Zeit [international ed.], January 21, 1994. return to text
  19. Daniel J. Kevles and Leroy Hood, eds., The Code of Codes: Scientific and Social Issues in the Human Genome Project (Cambridge: Harvard University Press, 1992), also see David L. Wheeler, "Scientists Worry about the Implications of Genetic Testing for Inherited Disease," Chronicle of Higher Education, August 4, 1993, A6–8.return to text
  20. Glen W. Davidson, "Human Remains: Issues Confronting Museums and the Scholarly Disciplines," Caduceus: A Museum Journal for the Health Sciences 7 (Spring 1991): 19–33.return to text
  21. Jeremy Rifkin, The New York Times [national ed.], May 3, 1991, C18.return to text