Historians traditionally probed the lives of past presidents by analyzing their speeches, reading their diaries, and tracing the trajectories of their lives. But now medical and genetic tools have been added to the arsenal of historic inquiry. And questions have arisen about the ethical and legal ramifications of the emerging field, “biohistory.”
A new book, FDR’s Deadly Secret by neurologist Steven Lomazow and The New York Post reporter Eric Fettmann, hypothesizes that Franklin Delano Roosevelt had cancer. The authors and came to that conclusion by analyzing photos of small lesion above his eye, thought to be a melanoma.
The assertion is nothing new. For at least half a century, physicians and journalists, including a 1979 Time magazine article, reported on just such a speculation. But newspaper and blog responses in the past few days are filled with anger about how FDR could have kept this from the public. There’s even a sense of outrage that his decision-making during World War II might have been impaired due to the spread of the cancer to his brain. In yesterday’s Post, Fettman accused FDR of endangering the nation by running for president with this supposed malady.
The authors’ indirect medical assessment has already come under fire. In contrast, other amateur and professional historians are using actual medical technologies. Many biohistorians employ genetic testing of blood or tissue from deceased presidents or their descendants — such as the tests to determine whether Thomas Jefferson fathered a child with slave Sally Hemings. I entered this field when the Chicago History Museum’s Chief Historian, Russell Lewis, and Textile Curator Nancy Buenger invited me to join a group to help create ethical guidelines for “biohistory.” The museums collection includes the blood-drenched cloak that Mary Todd Lincoln purportedly wore on the night of the assassination. They wondered whether it was legal — or ethical — to do DNA testing on the blood on the cloak to learn more about Abraham Lincoln.
As I worked with Laurie Rosenow, Jordan Paradise, Amy Inlander, and David Gonen here at the Institute of Science, Law and Technology of the Illinois Institute of Technology; Buenger, Lewis, and Bridge from the museum; historian Theodore Karamanski from Loyola University; and forensic experts David Stoney and Bob Gaensslen, a series of questions entered our minds: Who should have a voice in the decision? Should living relatives be tracked down and asked for their opinion? And what about other people who feel connected to the historic figure? What reasons justify DNA testing of historic figures and what should we make of the results? Should we test Abe Lincoln’s DNA for a genetic predisposition to depression? If he did have such a gene, would his genetic makeup mistakenly be viewed as more important than his political achievements?
Abe Lincoln’s tall stature, loose joints and abnormally-shaped chest led doctors to speculate that he may have had the genetic condition, Marfan Syndrome. The family of a person with Marfan Syndrome requested that the Chicago History Museum allow genetic testing on the cloak to search for the disease gene.
After an extensive, multi-year study that was funded by the National Science Foundation, we proposed guidelines for biohistorical testing and published about them in issue in Science and in The Temple Journal of Science, Technology, and Environmental Law. We brought the issue to public attention in an article in Parade, which generated a heated discussion in chat rooms and through e-mail, much of which came from people who didn’t want to see the image of their heroes (particularly Thomas Jefferson) tarnished by what they considered irrelevant genetic information.
We analyzed the ethics codes of 23 professional organizations from anthropologists to criminalists, who might be called upon to assist in the medical and genetic analysis of historic figures. We dissected hundreds of legal cases about the responsibilities of museum officials toward artifacts and about the duties of society toward the dead. By assessing what responsibilities the existing laws and professional codes demanded, we were able to generate a list of questions that anyone undertaking biohistorical research should answer.
Bob Gaensslen summarized them in this way:
1. Assuming the proposed test performs precisely as expected, and yields interpretable results, what important historical question will be answered? Will any ambiguities remain because the test results are intrinsically incapable of resolving them?
2. How destructive are the proposed tests? Are the proposed tests in any way proprietary?
3. How much experience does the proposer or anyone else have in performing the proposed test on items / objects of comparable age and condition as the target item? What rate of successful testing was observed in that body of experience?
4. Does the testing involve any genetic analysis? If yes, for what purpose: identification, diagnosis of disease or genetic defect, relatedness? Are appropriate references specimens available? Are there privacy issues (or medical privacy issues under the HIPAA) that must be considered and resolved?
5. How will the proposed testing be funded?
6. Who will have access to the results and findings? Will they be published in the open, refereed literature?
7. Why and how does the information that will be obtained justify the sampling and testing?
8. Is there a sampling plan?
9. Will the proposer make provisions for independent third party observers to the testing, or for independent third parties to be able to repeat the tests?
Ultimately, we decided against testing the blood on the cape. With current genetic technology, we’d have to destroy a portion of the cape to do the test. Plus, we might not gain any useful knowledge since the DNA has been on the cape for 145 years and genetic testing techniques are limited with such old samples. Not to mention the fact that hundreds of people have touched the cape, perhaps leaving some of their own DNA.
But ultimately the technology will improve and such a test will take place. What society does with the new information is another matter. Instead of blaming the historic figure for hiding an illness or seeking office while ill, we should celebrate the accomplishments of these presidents. If anything, the stories that are emerging indicate that you don’t have to be medically or genetically perfect to accomplish great things.