Uncloaking history: The ethics of digging up the past
■ Advances in DNA and forensics have spurred new interest in historical artifacts and the hidden messages they may hold for today.
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A bed sheet with a 139-year-old bloodstain lies inconspicuously tucked away in a box in a cabinet near the end of a maze-like storage area at the Chicago Historical Society.
As the box is reverently removed from the cabinet and opened, voices turn to whispers. It's believed the bloodstains are the result of a tragic incident involving a beloved historical figure, and a certain amount of decorum is called for.
Some believe the blood might answer questions about the physical and mental well-being of this country's 16th president, Abraham Lincoln. But a team of bioethicists, historians, scientists and attorneys argue that the genetic testing being proposed might not be appropriate or worth the effort. They say there's no guarantee the blood actually came from Lincoln's fatal gunshot wound, and they question the historical value of the research and whether such an investigation would violate the medical privacy of Lincoln's living relatives.
Advances in forensic science and DNA technology have prompted new interest in testing historic items, but little thought has been given to setting limits or creating guidelines for such testing. The Chicago Historical Society, prompted by a growing number of inquiries about testing Lincoln relics, has decided some kind of policy is needed and is hoping theirs will prompt other museums and research institutions to set some policies of their own.
"We want people to stop and think and answer questions before they start with this analysis," said Nancy Buenger a CHS conservator and historian at the University of Chicago. "Is this good science? Is this an important historical question? Who is this going to affect? Is it justifiable?"
In addition to requests from Nobel Prize winners and cable television stations seeking "reference samples" of Lincoln DNA, there have been requests from "armchair historians" and artifact dealers hoping to see if DNA on relics they bought matches those in the CHS collection. An eBay seller was seeking $1,300 for a lock of Lincoln's "last breath" hair.
"That raises the question: Is that the business the Chicago Historical Society wants to be in?" asked Laurie Rosenow, an attorney at the Illinois Institute of Technology's Institute for Science, Law and Technology.
Buenger, Rosenow and colleagues looked to the professional codes of 23 organizations representing the fields of history, chemistry, sociology, archaeology and anthropology and found some guidance, but nothing that fully answered their questions.
Many codes stress the need for confidentiality, but in a report published in Science, Buenger, Rosenow and their co-authors noted that "Biohistory by its very nature deals with an identifiable figure and often about his or her family," so lack of confidentially is a given from the very start.
They also wrote that biohistory investigations can result in the release of private medical information for "dubious scientific or societal gain," or be conducted for commercial or sensationalistic aims. For example, the Nobel Prize winner seeking a Lincoln DNA sample was looking to replicate the DNA and embed it in amber jewelry that his company would sell.
Buenger and CHS research assistant Jennifer Bridge noted that one of the most egregious violations of privacy occurred when detailed genetic information comparing descendents of Thomas Jefferson and Sally Hemmings was published.
Buenger said the study proved the couple had common relatives, but not that Jefferson fathered Hemmings' children. What it also proved, Bridge said, were the prejudices of historians who had not paid attention to centuries of black oral history.
There is also reported interest in unlocking whatever secrets can be found in the DNA of George Washington, explorer Meriwether Lewis, Albert Einstein, Beethoven, Elvis Presley and the remains of people in New York City's African Burial Ground.
Some suggested guidelines
Generally, Chicago Historical Society researchers recommend genetic testing be used to answer only "historically significant" questions, that the test being proposed can actually answer those questions and that the funding sources and the likely level of destructiveness to the artifact be disclosed in advance.
There is also a suggestion that these studies be subject to oversight from a five-member biohistorical review board consisting of a historian, biological scientist, anthropologist or sociologist, lawyer or ethicist, and member of the public.
"Biohistory is a new way of peering into the past, but it raises ethical, legal, scientific and social questions that have not yet been addressed either by the scientific or historical communities," said Jordan Paradise, a legal fellow at the Institute for Science, Law and Technology who is also working on the CHS project.
The team plans to present its draft guidelines at a conference this October. In December or January, a final version will be released that would be designed as a model for other institutions to use, Buenger said.
Not everyone, however, who has heard about the project supports it.
Bioethicist Michael H. Shapiro, a University of Southern California law professor, said he thinks the proposed guidelines would put an undue burden on investigators to justify their research, which they've probably justified to several other boards already. The CHS team has not provided enough evidence establishing a real need for the guidelines that place excessive value on the interests of the long dead, he said.
He also disagrees with the idea that this is another example of science advancing faster than society's ability to regulate it. "The claim that science and technology keep 'outrunning' ethics and law is conceptually confused, although somewhat understandable," Shapiro said.
"There can never be a complete specification of the meanings of fairness, justice and equality," he added. "This is not a human failing. This is part of moral/conceptual reality. We will no more get this stuff 'nailed down' than we will someday get to the last digit of pi."
But since starting this project in 1999, Buenger said she's heard from large and small institutions who report wrestling with the same issues as the CHS -- and the growing popularity of science and history television programs has added fuel to the fire.
"We think there has to be a lot more thought put into this," she said. "It's not just a sexy, reality TV-type analysis you're talking about here. This could affect real people."
Past versus present
Although testing may put to rest some long-debated historical arguments, the CHS team has raised questions about the here and now. Would a family's privacy be violated? Would some sort of genetic disease be uncovered that could affect someone's insurance or employment?
"I don't think anyone has raised these issues before -- at least not in a systematic way," said Robert E. Gaensslen, PhD, head of forensic science at the University of Illinois at Chicago's College of Pharmacy and a member of the CHS guideline team.
"A lot of the testing that's proposed is genetic testing, so who has standing to give permission for testing someone's specimen?" he asked. "Do you give up all your privacy to be a historic figure -- and what about living relatives?"
Dr. Gaensslen said the CHS collection of Lincoln relics have a certain aura about them that shouldn't be disturbed for trivial reasons.
"It's just awesome to see them. You don't know if they're real, but it's just awesome," Dr. Gaensslen said. "These are things you almost feel reverent toward, and it makes you think 'Do I really want to cut this stuff up to do genetic testing just because I can?' I can't think of any question that would justify cutting up these specimens."
But others believe that finding out whether Lincoln had Marfan syndrome, as his physical characteristics suggest, provides such justification.
Some historians have theorized that if Lincoln had Marfan syndrome he may not have completed his second term as president even if he hadn't been assassinated.
"You definitely can't diagnose someone by their outward signs, a lot of those characteristics are common in the general population," said Eileen Masciale, director of communications with the National Marfan Foundation, who said she has been asked whether Lincoln died from Marfan syndrome. She said learning whether Lincoln had the disorder could help save some lives.
"If he had it, it would be like what FDR did for polio," Masciale said. "In terms of awareness, it puts a face to the disorder and that's a good thing."
In 1991, Victor A. McKusick, MD, the former director of the Division of Medical Genetics at Johns Hopkins University in Baltimore, chaired two committees that explored whether Lincoln's bone and blood specimens at the National Museum of Health and Medicine in Washington, D.C., should undergo DNA analysis. He said the ethics committee said yes, but the technical committee said not yet.
Dr. McKusick said he believes the technology is still not available to see if Lincoln had a genetic predisposition for depression, but he thinks the specimens can and should be tested for Marfan syndrome. While acknowledging the possible invasion of privacy, he said the subject matter is important enough to go forward.
"When studying genetics, you're not only studying the DNA of an individual, but also the DNA of relatives," he said. "But, beyond parents, siblings and offspring, that connection is very tenuous, and I don't think the invasion of privacy here is significant."
Dr. McKusick said tests could show that people with Marfan syndrome can "achieve great things" and that learning about the health of people who shaped history has significance.
"If [Lincoln] wasn't aware of it, if it wasn't causing any particular difficulties for him, why is it relevant?" she asked.
There are even questions about whether Lincoln was really a Lincoln, with a story that he might have been born out of wedlock, but Bridge said even that doesn't really matter.
"At the time, nobody was questioning that he was his father's son," Bridge said. "It doesn't really tell us anything now because, in that historical context, nobody was asking those questions then."