Abraham Lincoln and the DNA Controversy

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.