American Journal of Law & Medicine

Do the dead have interests? Policy issues for research after life.(Law, Medicine and Socially Responsible Research)

The importance of establishing rights in a dead body has been, and will continue to be, magnified by scientific advancements. The recent explosion of research and information concerning biotechnology has created a market place in which human tissues are routinely sold to and by scientists, physicians and others. The human body is a valuable resource.(1)

I. INTRODUCTION

The body of the nineteenth century philosopher Jeremy Bentham is on display in a glass cage at University College, London.(2) Bentham applied his utilitarian perspectives to the body by suggesting that corpses, including his own, would be of greater use to society stuffed and displayed as an "auto-icon" rather than simply buried away.(3) Preserved, exhibited and studied, thc corpse, he said, could serve "moral, political, honorific, dehonorific, money-saving, money getting, commemorative, genealogical, architectural, theatrical, and phrenological" ends.(4)

But the corpse is more than a utilitarian object; it is an ambiguous entity-subject to conflicting beliefs and contradictory representations.(5) It has sacred meaning. We maintain burial grounds as sacred places and celebrate national holidays to commemorate the dead. And every religious faith has beliefs pertaining to the treatment of corpses. Laws have recognized the corpse's instrumental value as an object for scientific study, clinical teaching and commercial gain, but they have also accommodated the desire to respect remains.

Scientific studies in biotechnology have placed increased value on the body as a source of research material, yet because of the ambiguous status of the corpse, the use of human tissue from the dead for research or medical training remains controversial. Disputes reflect the striking differences between scientific or utilitarian perspectives and the body's social meaning. These differences are becoming increasingly important as a variety of technological developments from genetic testing(6) to modem scanning techniques(7) have enhanced the research value of corpses.

In this Article, we assess historical controversies involving anatomy and dissection, describe four categories of cases, interpret the interests and social values involved when corpses become the focus of competing claims and suggest policy considerations for dealing with research on the dead.

II. HISTORICAL CONTROVERSIES OVER RESEARCH ON THE DEAD

Research and clinical uses of deceased individuals' bodies have been controversial since the early days of anatomical dissection when the process of fragmenting the body evoked Dantesque visions of Hell. The issue of integrity and continuity in the next life dominated the medieval discourse on the body. "[S]alvation is wholeness, hell is decay and partition."(8) Because the body's integrity was thought to be necessary for salvation in the afterlife, many people did not want their corpses subjected to autopsy and research. Certain religious groups maintain this perspective today.(9)

During the Renaissance, these views clashed with the growing culture of inquiry. The dead body became increasingly valuable as an object for research through dissection (Vesalius), anatomical studies (Leonardo da Vinci) and autopsy to improve clinical understanding (Rudolf Virchow).(10) By the early nineteenth century, the corpse was well integrated in clinical thought, and the anatomical findings revealed by autopsies became the basis for both medical understanding and the development of the science of pathology.(11)

Still, the practice of autopsy remained controversial. The public considered the dissecting of a dead body to train medical students a degrading and sacrilegious practice, an act inflicted as punishment on executed criminals or other marginal or powerless persons.(12) Body snatching from black and almshouse graveyards was rampant in nineteenth century America. "[D]issection remained a humiliation imposed on social outcasts,"(13) notes historian David Humphrey. Though valued as medically informative, it also reduced the body to "the status of `anatomical materiel' a neutral object of study and manipulation."(14)

Body snatching became a lucrative practice. Because bodies were in short supply, they became valuable commodities--as historian Michael Sappol described them, "object[s] of exchange whose value fluctuated according to the law of supply and demand."(15) Anatomy departments paid between ten and thirty-five dollars for a body, more than the weekly wage of a skilled worker at that time.(16) Bodies were obtained in devious ways--through grave robbing(17) and even the murder of beggars.(18) As described by historian Ruth Richardson, corpses were "quarried"; "Parts extracted were sold to those who could use them, such as dentists and wigmakers, and to those who assisted medical research and study, such as articulators of bones for medical skeletons, and medical-specimen makers. Profits were to be made at every stage."(19)

The practice of body snatching continued until anatomy laws--passed in various states throughout the nineteenth century--eased the shortage by allowing medical schools to use the bodies of executed murderers and the unclaimed dead.(20) These laws regularized the practice of dissection, reassuring law- abiding middle and upper class individuals that their bodies would not be involved.(21) But throughout the nineteenth century, writes Sappol, people remained sensitive to the dangers of commercialization, insisting that the body remain "sequestered from the market economy, from any calculus advantage or disadvantage."(22)

Objections to dissection in the nineteenth century focused on both the instrumental and the commercial calculus, "the claim of science and the claim of the mart."(23) An article in Harpers in 1854 captured the dilemma: "Science may prove, ever so clearly, that there is nothing there but carbon, and oxygen, and lime, ... but all this can never eradicate the sentiment we are considering. It enters too deeply into our laws of thinking, our laws of speech, our most interior moral and religious emotions."(24)

Disputes over the sources of cadavers for science and medicine reemerged after World War I, when surgical requirements brought about by war casualties greatly increased the need for surgeons trained in anatomy.(25) The bodies of servicemen killed in the war were ideal subjects for training physicians, but the bodies' ownership was contested.(26) While the medical profession sought bodies on which to practice, families wanted them returned.(27) To appease the families, doctors assured that they would give the cadavers reverential treatment and would return all removed body parts to their "shell."(28) But in fact, "insufficient care was taken to ensure that separated parts of an individual's body were returned to the correct shell."(29)

The practice of autopsy continued as an essential part of medical education, but, as experimentation became the preferred mode of discovery, the information revealed by autopsy seemed to possess less compelling value to researchers, and interest in research on corpses dramatically declined.(30) The rising importance of molecular diagnostics in the 1990s, however, augmented the value of tissue from the dead.(31) Today, dead bodies serve a variety of research purposes. Pathologists argue that analysis of tissues using molecular methods is helping them to understand many diseases.(32)

The historical disputes over dissection reflected several concerns about the violation of body integrity involved in cutting corpses, the collection and use of bodies without the consent or authorization of families and the "snatching" of bodies for profit. Concerns about body integrity, unauthorized collection and commercial exploitation remain in our historical memory. Today, dead bodies serve a variety of research purposes. Some research, such as studies requiring genetic material, can be accomplished with consenting, living volunteers.(33) But other investigations can be more easily accomplished on dead bodies, such as teaching medical students intubation techniques.(34) And some studies require the use of corpses.(35) Researchers at the Body Farm at the University of Tennessee, for example, bury donated bodies or leave them by the side of the road.(36) By determining how deteriorated and insect-ridden an abandoned corpse is at a particular time, they can advise medical examiners how to best estimate the time of death.(37)

Today, old tensions have taken on new dimensions as the commercial potential of human tissue has captured the entrepreneurial imagination--as market interests provide incentives to treat tissue, blood and other body parts as valuable, collectible commodities.(38) A close look at four types of cases reveals their legal, personal and social dimensions. Disputes today raise several legal questions: Should pathologists or other researchers be able to take tissue from the dead when there has been no consent? If an autopsy has been authorized, does this imply permission to take body tissue for research? Once research is completed, how should the body and its parts be treated? These narrow questions often have ambiguous legal answers. To develop an appropriate policy framework, it is necessary to understand the social values that underlie disputes.

III. CONTROVERSIES ABOUT RESEARCH ON THE DEAD

A. CASE I: CELEBRITY RESEARCH WITHOUT CONSENT--THE CASE OF EINSTEIN'S BRAIN

Albert Einstein died of a ruptured abdominal aortic aneurysm on April 18, 1955, and his body was cremated.(39) The scattering of ashes took place at a location and time that was not publicized because Einstein had indicated he did not want a shrine, memorial, statue or museum.(40) He used to say, "I want to be cremated so that people won't come to worship at my bones."(41) Nor did he want to be studied.(42) Einstein's family assumed that his entire body had been cremated,(43) but his wishes had not been respected.(44) Dr. Thomas Stoltz Harvey, the pathologist at Princeton Hospital who conducted Einstein's autopsy, removed and kept his brain.(45) Without any previous consent from Einstein, he arranged for it to be sliced and embedded in celloidin, so that he could examine the pieces under the microscope.(46) Harvey stored the sections in cardboard boxes and larger pieces in glass jars.(47) He controlled access to the brain tissue, giving pieces to about twelve scientists who hoped to discover its unique qualities.(48) Einstein's brain yielded little interesting scientific information, but the way it was handled yielded many questions about informed consent, respect for preferences and the control over tissue samples.

Would Einstein have consented to the study of his brain? Harvey insists that, "He being the scientist that he was, I think he would have agreed to the study of his brain."(49) But there is much evidence to dispute this contention. Einstein's papers contain no mention of a desire to donate his brain for research.(50) He did not choose to donate his body to science, as others such as Bentham(51) and Sir William Osler(52) had done.(53) Instead he chose to have his body cremated, which would preclude scientific study. He took elaborate precautions to protect his image, bequeathing the right to license it to Hebrew University.(54) If he had wanted his brain used, it is likely he would have taken similar precautions to assure that its uses coincided with his wishes. Harvey's claim to know what Einstein would have wanted is particularly weak, given that he had ample opportunity to obtain consent. He had personally collected and analyzed Einstein's blood during his lifetime, yet did not get permission to study his brain.

Although Harvey took Einstein's brain for research purposes, he possessed it for over forty years without using it for meaningful research. In the 1980s, Marian Diamond, a neuroanatomist at the University of California at Berkeley, saw a picture in a science magazine of Einstein's brain tissue in a cardboard box next to Harvey's desk and, after some difficulty, convinced Harvey to give her some tissue to study.(55) He sent her the tissue in a mayonnaise jar.(56) Diamond found that Einstein's brain had a greater glial/neuron ratio than did eleven controls,(57) and published a study, including Harvey as a co-author as a courtesy for providing the tissue.(58) But Diamond was quick to point out her study's limitations, including the small sample size and the fact that she had no other geniuses' brains for comparative examination.(59)

Finally, in 1996, forty-one years after he had taken the brain, Harvey published an article about it. Along with co-author Britt Anderson of the University of Alabama Department of Neurology, he asserted that, "[s]tudying the brain of a genius can play a small and titillating role in the quest to identify these neurobiological features [that affect intelligence]."(60) They compared Einstein's brain to five controls and concluded that Einstein's brain was within the average range in weight, but below the mean for men his age.(61)

Neither Diamond's nor Harvey's research had sufficient controls or measures to determine whether Einstein's particular brain morphology was related to his intellectual capability. In fact, other researchers questioned the appropriateness of trying to learn about genius through a physical study of the brain. Dr. Janice Stevens of the neuropsychiatry branch of the National Institute of Mental Health pointed out, "Many idiots have big brains loaded with glial cells."(62) Physicist Banesh Hoffman, Einstein's biographer and former assistant, also criticized the idea of studying the physical brain.(63) So too did Robert Schulman, director of the Einstein papers at Princeton University: "He'd think it was ridiculous that people were chopping up his mind to see where his power came from.(64)

Other "celebrities" have also been subjected to research after their death. In recent years, the New England Journal of Medicine has published articles on Karen Ann Quinlan's brain(65) and Hubert Humphrey's cancerous bladder.(66) Some celebrities have been disinterred to probe their genetic make-up or to solve the "mysteries" surrounding their life or death.(67) In February 1994, the Federal Bureau of Investigation tested the hair relics of George Washington, after establishing their authenticity by comparing them with living relatives.(68) It is unclear from reports what type of testing researchers performed. Some researchers suggested testing Washington's samples to determine the cause of his health problems, including possible infertility.(69) Along the same vein, researchers proposed genetic testing for Marfan's syndrome on samples of Abraham Lincoln's hair, bone chips and blood stains stored at the National Museum of Health and Medicine, affiliated with the Armed Forces Institute of Pathology.(70) Marfan's syndrome is characterized by weaknesses in bones, joints, eyes and the heart.(71) Marfan patients are often tall with long limbs, fueling speculations that Lincoln had the condition.(72) Due to the finite supply of Lincoln's DNA, administrators at the National Museum of History and Medicine decided to delay the study, pending improvements in DNA test techniques and more knowledge about the genetic cause of Marfan's syndrome.(73) But many other deceased historical figures--from statesmen to outlaws--are being considered as subjects for research.

B. CASE II: GROUP RESEARCH WITHOUT CONSENT -- THE CASE OF NATIVE AMERICAN REMAINS

Einstein's corpse was a target for research due to his personal characteristics.(74) In other instances, corpses are of interest in studies of group characteristics. Native American corpses in particular have long been a focus of research. Anthropologists and archaeologists of the eighteenth century looked on Native Americans as "`noble savages,' unspoiled examples of what mankind must have been like in its earliest days, before the Biblical Fall."(75) They were "material" providing scientists with "valuable clues" to past cultures.(76) In 1793, Thomas Jefferson, the father of American archaeology, endorsed burial excavation claiming he had the right to systematically excavate and remove the remains of over 1000 known Native American graves on his plantation by "virtue of a higher order called science."(77) Scientists of the time were primarily interested in Native American burial goods, but human remains were inevitably and "incidentally" excavated.(78)

During the 1830s, two new "scientific" disciplines, craniology and phrenology, found uses for these incidental human remains.(79) Researchers used the excavated bodies of Native Americans in attempts to categorize humans ethnically and to estimate intelligence based on the size and shape of crania.(80) The largest Indian crania study involved the study of the Native Americans killed at the Sand Creek massacre whose bodies were "donated" by the U.S. Army.(81) Furthermore, in 1868 the U.S. Surgeon General instituted his own crania study and ordered that all troops stationed near Native American burial sites fulfill their patriotic duties and collect and contribute more specimens for research purposes.(82) These craniological and phrenological studies were used to support theories that all non-whites were intellectually and morally inferior.(83) They were ultimately discredited, but researchers continued to view Native American remains as objects of curiosity. …

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