Test of Lincoln DNA for Malady Urged : Science: An expert panel says the search for proof of Marfan syndrome could help counter bias against people who have genetic disorders.
The benefits of studying DNA from Abraham Lincoln’s tissue outweigh the ethical considerations, a panel of experts said Thursday in recommending that researchers attempt to determine whether the Civil War President suffered from a debilitating genetic disease known as Marfan syndrome.
The panel, appointed by the museum that owns some of Lincoln’s tissue, grappled with a complex set of ethical questions regarding a living or deceased person’s right to privacy and considered what sort of precedent its decision would set.
For the record:
12:00 a.m. May 10, 1991 For the Record
Los Angeles Times Friday May 10, 1991 Home Edition Part A Page 3 Column 5 Metro Desk 2 inches; 52 words Type of Material: Correction
Marfan syndrome--A May 3 story about Abraham Lincoln and theories that he may have suffered from Marfan syndrome noted that the disease can cause weakness of the heart and sudden death. It should also have mentioned that not everyone with Marfan syndrome has heart problems, and those who do can reduce their chances of fatal attack through treatment and lifestyle changes.
But the panel of doctors, researchers and a Marfan sufferer concluded that in this case, at least, the research should be done. It noted that, if it was proved that Lincoln had the disease, it would demonstrate that genetic disorders and other handicaps do not prevent great accomplishments.
Doctors have suspected since the early 1960s that Lincoln may have suffered from the inherited disease, which causes its victims to grow unusually tall and weakens the heart, bones and eyes. Marfan syndrome also causes dilation of the aorta, the main artery of the heart, which can eventually rupture and result in sudden death.
Lincoln was thin and stood 6 feet, 4 inches tall.
Earlier this year, a doctor in Philadelphia recommended that new techniques in molecular genetics be used on samples of Lincoln’s tissue taken after he was assassinated in 1865 and kept at the National Museum of Health and Medicine in Washington.
The tissue includes seven bone chips from where a bullet entered his head, bloodstains from the clothes of one of his physicians and several locks of his hair.
The museum also has tissue samples from two other U.S. presidents, Ulysses S. Grant and Grover Cleveland.
The project could establish a precedent for examinations of the genetic material of other historical people whose tissue samples also have been removed and saved during surgery or autopsy. Tissue samples from dozens of military figures and politicians are preserved in hospitals, museums, libraries and research institutions.
The museum convened the panel to advise it on how to respond to the doctor’s request regarding Lincoln.
Even after recommending that the tissues be studied, Dr. Victor A. McKusick, who headed the panel, noted that the committee must still “accommodate the twin goals of enhancing individual and public health and respecting personal autonomy.”
The committee reasoned that, because Lincoln died 126 years ago and no lineal descendants are alive, it saw no compelling legal reasons to deny researchers access to the tissues.
However, McKusick cautioned that “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.”
McKusick said that the samples would be used only to detect the presence of Marfan syndrome and that “examinations would be performed in a manner that does not diminish the dignity of the subject.”
Cheryl Williams, president of the National Marfan Foundation and a sufferer from the disease, said that, if researchers do conclude that Lincoln suffered from Marfan syndrome, it would show how disabled people can overcome their handicaps and contribute to society.
“It’s very evident to all of us what (Lincoln) accomplished,” she said.
McKusick said that determining whether Lincoln had the disease “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.”
Doctors also hope that further research will help them find the gene responsible for Marfan syndrome and develop a DNA test that would detect the disease at an early age. Williams said that people with Marfan syndrome must alter their lifestyles to reduce the strain on their hearts.
More than 40,000 people in the United States suffer from Marfan syndrome. Williams said they could “die at any time.”
The final decision on whether to begin the experiment will be up to the board of governors of the Armed Forces Institute of Pathology. Testing could begin early in 1992, a museum official estimated.
“Meanwhile,” McKusick said, “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.”
BACKGROUND
Marfan syndrome typically strikes people who are tall and thin, with long arms, fingers and toes and extremely flexible joints. Roughly one in 10,000 Americans has the inherited disorder. The syndrome can weaken areas of the heart, blood vessels, lungs, bones, skin and eyes.
