Tuesday, May 5, 2009

Museum nixes Lincoln request – Is there still hope?

I was in the midst of writing a blog post about a doctor’s quest to learn if Abraham Lincoln had a rare cancer. I’d planned to publish the story before a Philadelphia museum board’s decision about allowing testing on an artifact with Lincoln’s blood. The decision was made one day earlier than had been speculated. The answer is no. I’m going to share what I learned anyway. I think it still has relevance.

Here’s my planned article, revised only slightly based on the decision.

A tall, gangly fifty-six-year-old man with sallow complexion, deep-set gray eyes, hollow cheeks and a dark-whiskered jaw suffers from a mysterious medical condition. Try as they might, medical experts can’t seem to put a finger on it. They’ve got suspicions, but it will take further tests to know for sure what ails this famous patient.

Sound like a case for House, M.D.? You're not far off. John Sotos, M.D., is a medical consultant on the popular television series and a cardiologist. Sotos wants to solve a 144-year-old medical mystery. Instead of needing help from a class of medical residents, though, he needed the blessing of a museum in Philadelphia.

Sotos, also author of The Physical Lincoln, wants to test a strip of a pillowcase stained with the sixteenth president’s blood and brain matter for a rare genetic cancer syndrome, multiple endocrine neoplasia type 2B (MEN2B).

Why?

House - oops, I mean Sotos – tells me it’s about the medicine and the history associated with Abraham Lincoln, not the DNA.

Sotos apparently told the media he’s not giving interviews, so I felt fortunate to get any comment at all from him. I thought I would. This guy once went out of his way to track down information for me about Lincoln and the California missions. Anybody who’ll offer to drive anywhere in California traffic is my hero! I figured it couldn’t hurt to ask.

Because of the doctor’s request, board members of Philadelphia’s Grand Army of the Republic Museum and Library were faced with a weighty decision. Should they or shouldn’t they let Sotos test blood from the strip of cloth in their collection? What were the scientific and ethical implications? They were expected to make a decision on the matter at a meeting Tuesday, May 5, 2009. They made it on May 4. They said no.

Gee, this sounds familiar
Though this may be the first time the issue has come up for the museum board, it’s certainly not the first time the issue has been discussed – or that Lincoln’s DNA has been requested of a museum. In fact, a panel formed to look into the issue in the early 1990s seemed to get the ethical issues out of the way back then.

In June 1989, Darwin Prockop, M.D, Ph.D approached the National Museum of Health and Medicine (NMHM), wanting permission to test Lincoln artifacts there for Marfan syndrome, a genetic condition responsible for physical characteristics like Lincoln’s –great height, unusually large limbs, a squint in the eye.

Marfan syndrome first hit the Lincoln radar in 1959 when Dr. Harold Schwartz saw a young patient with the disorder. The youngster just happened to be from a branch of Lincoln’s family tree – and wasn’t the only family member with the disorder.

In looking at Prockop’s request, the need for further investigation into the scientific and ethical aspects seemed clear. By 1991, a conference was held and a panel formed to discuss the issue. A second panel met in 1992.

If I’m reading the accounts correctly, the consensus was that ethically it was okay to proceed, but that scientifically it wasn’t a good idea - then. It was feared the irreplaceable specimens would be damaged or destroyed in testing.

But, as Norbert Hirschhorn, M.D. points out, testing has advanced in the years since. Hirschhorn, a physician specializing in international health, was recognized by President William Jefferson Clinton as an “American Health Hero.” His work with rehydration therapy has saved lives of millions of third world youngsters.

Hirshhorn has researched medical conditions that may have affected famous people from the past, including Lincoln. He recently presented a paper on the effect of elemental mercury on Lincoln. However, Hirschhorn says he wouldn’t test for mercury because so much environmental pollution has taken place since 1865 that he believes any result of testing for mercury would be meaningless.

What would Robert Todd Lincoln say?
Some say this decision would be easier if Lincoln had living descendants. There are none. There is one guy we can ask, though.

In the pool of Lincoln scholarship, Jason Emerson has just begun his swim, but already he’s made a big splash. His first book, The Madness of Mary Lincoln, used previously undiscovered letters to show us a side of Mary Todd Lincoln never before exposed. His latest book is Lincoln the Inventor. And, he’s currently at work on a definitive biography of Robert Todd Lincoln, due out within the next couple years.

I figured Emerson knows Robert Lincoln as well as anyone. He should, after living in the famous son’s world day in and day out. Many have speculated – both in the 1990s and now – what Robert might have thought about this issue.

Emerson also knows Sotos’s book and calls it “the best Lincoln tome I've read in many years.” He said, “if any medical theory about Lincoln is correct, his has convinced me.”

Yet, from his knowledge of Lincoln’s longest living son, the scholar does not believe Robert Lincoln would have agreed to testing - for two reasons. Emerson said, "As he once wrote to William Herndon, the measure of a man was his public work, not his private aspects, and medical testing of DNA Robert would see as an invasion of privacy; secondly, I believe Robert would think it completely irrelevant whether his father did have cancer or Marfan or anything else since it did not affect his job performance before he died."

Voices from the past
I checked in with some of the people involved in the early 90s for their reflections on the earlier request. I also asked how they think new knowledge about Lincoln’s health would impact the Lincoln legacy. I spoke with Prockop himself, panel member Dr. Cullom Davis, then senior editor of the Lincoln Legal Papers Project, and Marc Micozzi, M.D., Ph.D, director of the NMHM at the time.

Since his request to test for Marfan syndrome twenty years ago, Prokop has moved on and left his request behind. Yet, along the way, he set up a lab at Tulane University where a much more accurate test can now be done for Marfan. He wonders if, while we’re testing for MEN2B, we might not want to test for Marfan, also.

“Wouldn’t it be interesting, too,” Prokop speculated, “if we could sequence Lincoln’s genome - to look for the seat of his genius – to see what collection of genes makes somebody better – to see what makes a good human being.”

A genome, Prokop explained is the whole collection of genes in an individual or animal.

Prokop sees three things that could come of such testing:

  • Learning what disease(s) Lincoln had
  • Reassuring others who also suffer from Lincoln’s ailment(s)
  • Providing a database of an outstanding individual for all time

Prokop suggests that perhaps it’s time to bring together a new commission to explore the issue. It would be interesting to see who would be chosen to serve on such a commission.

Davis called the earlier panel an interesting combination of experts – pathologists, geneticists, museumologists, a representative of a Marfan organization and a lone historian, Davis, chosen due to his work on Lincoln. He remembers the interesting perspectives each brought to the table.

At one point Davis was asked, “How would Abraham Lincoln react to all this?” He told the committee, “You’ve asked me an impossible question. It can’t be answered with any certainty.” Why is it that people always have “What if” questions about Lincoln?

Davis reminded the panel that Lincoln was open-minded about science and inventions. In fact, one of his early speeches was about “Discoveries and Inventions.”

“Yet, that’s not to say Lincoln would have approved,” Davis said. “If you’d asked him, he wouldn’t have understood. He had a keen interest in science, even held a patent, but this is a question you can’t pose of a man who has been dead 140 years.”

Emerson validated Prockup’s comments when he said, "If Lincoln did have cancer or MEN2B or Marfan or any other chronic degenerative disease, and DNA proves it, it will simply be used to magnify his apotheosis to show that he was even 'greater' than we thought because he fought off a debilitating disease in the midst of his other trials (the same argument for his 'depression" and many other theories), but I don't see how it truly affects his life story and his public works."

So what can we learn if we test Lincoln’s tissue – for this or anything else?

Harold Holzer, co-chair of the U.S. Abraham Lincoln Bicentennial Commission and author, co-author or editor of 34 books on Lincoln, said it best, "The scholar—and the general public alike—can’t help but be curious about what science can tell us about history. Anything that encourages the two disciplines to work together in search of knowledge can only be good—no matter how 'bad' the information it might yield. I for one do not think Lincoln’s remains or DNA should be regarded as sacred relics; Lincoln’s memory rests in his words and deeds, and is amply recalled in statues and images, manuscripts and documents, along with authentic relics of both his life and death."

The real question – Is this the right specimen?
The question seems to be less whether tests should be done, but whether the specimen from Philadelphia is the right one to test. Why not go to the NMHM to test the Lincoln relics there? Some of those I interviewed asked this question.

Hirschhorn believes DNA testing should be done where it is certain that the blood is Lincoln's and notes that there is also bone that can act as a control.

Holzer said, "I say do the DNA test on whatever authentic blood and bones we have. However, the key word here is 'authentic.' I am not convinced that the provenance of this particular textile is unimpeachable, nor does anyone know that it has been compromised over the years by reverential (but DNA-spreading) touching and feeling. If someone wants to do a DNA test, once and for all, it should be performed on the bone fragments from Lincoln’s autopsy, still preserved and unmolested at the National Medical Museum. A definitive test deserves to be free from the taint of doubt."

A bigger question – Where, oh where will Lincoln go?
Yet, one authority close to the earlier case says there's another story here. When asked about the earlier commission, Micozzi chose instead to speak of a bigger concern. He’s quick to point out that Walter Reed Army Medical Center, where the NMHM resides, is slated to close next year. Don’t you wonder where Lincoln's hair, blood and bone fragments will end up then?

Hopefully, not in a box in a warehouse somewhere.

House, move over. This sounds like a case for Indiana Jones.

Epilogue
I was reminded early one morning by an enthusiastic six-year-old in Spiderman pajamas who popped his head in my library that projects like the one Sotos proposes are about preserving Lincoln’s legacy for future generations. My little buddy quipped, "Grandma, are you writing an email about Lincoln? That's nice that you do that."

What's in the best interest of these little ones and those not yet born? Is it a benefit to them to allow the testing? That’s a question we need to answer.

And, don't we owe it to future generations to make sure the artifacts have a home where they can continue to teach about real heroes - in whatever way that is?

Learn more
For more information on Lincoln’s DNA, read:

A debt of gratitude
Among other sources, information in this article came from the articles listed above and articles in the Philadelphia Inquirer on April 13 and May 4.

I also owe a great debt of thanks to: Jason Emerson, Collum Davis, Norbert Hirschhorn, Harold Holzer, Marc Miccozi, Darwin Prockup and John Sotos. Each of these men helped me by guiding me to primary or secondary sources, answering my questions or granting interviews. Thank you, gentlemen.

© Copyright 2009 Ann Tracy Mueller. All rights reserved.

4 comments:

Ernest Nicastro said...

Ann,

I enjoyed your post.

Very nicely done. Provocative subject matter and well-written and researched.

As to what Lincoln would say about all of this. My thinking is that whatever response he'd have would contain more than a dollop of the endearing wit and humor he is so well known for.

Ann Tracy Mueller said...

Thank you, Ernie. I appreciate your kind words and tend to agree, Lincoln would have spun some fun with this one. Thanks for reminding us how his wit was one of the things that made him so loved by his countrymen.

Joshua Patty said...

Ann,

This is a fantastic article, well-research and clearly presented. I'm especially impressed with the comments you've included by Holzer and Emerson.

If I could add just one little thing, I would point out that any testing is likely to damage/destroy part of the artifact, in this case part of the sliver of pillowcase. Even with the advances in the testing, the museum board would be consenting to a destruction of at least part of their specimen. I just cannot imagine any museum board accepting testing under those circumstances.

I'm a fan of your blog, and impressed by how much and how often you post. Please keep the good work.

Ann Tracy Mueller said...

Joshua, Thanks your compliments and for a point well taken.

I certainly recognize, as well, that we would lose a part of any precious artifact we would test. I knew that at heart, just didn't get it into my article. This is, of course, one of the concerns with any testing.

Thanks, too, for your very nice words about my article in your blog, Lincolniana, http://lincolniana.blogspot.com/.