The Role of Medical Anthropology in Explaining Aetiology and Epidermiology
15th May 2012
‘As a social phenomena, epidemics are said to have a familiar dramaturgic form. They “start at a moment in time, proceed on a stage limited in space and duration, following a plot line of increasing and revelatory tension, move to crisis of individual and collective character, then drift toward closure’
The study of epidemics provides a unique profile from which to examine the relationship between cultural assumptions, institutional forms and states of mind. Anthropological studies of this kind describe the spread of kuru, the native endocannibalistic funerary practices, the social-cultural effects of disease, the life of women and children, the kinship system of the Foré and their willingness to incorporate outsiders into it, their folk law and their histories as well as the histories of their neighbors, sorcery as a social phenomenon and as a method of explaining the causation of disease and the concepts of its treatment. This paper aims to focus on the story of the Fore, during the kuru epidemic the role of medical anthropological research in helping to explain both the aetiology and epidermiology of the disease that decimated their entire population.
Anthropology is both a natural science and a humanistic discipline, mediating between human biology and ecology on one hand and the study of human understanding on the other (Wolf, 1974:13, cited in Ann Herring 2010:342). More specifically, Medical anthropology involves the comparative examination of disease, health problems and conditions and health care systems, illness as a social construct, diagnosis, management and treatment in various societies (Kottak 2010:63). As a major branch, applied medical anthropology deals with the public health, policymaking, program development, and intervention. It is also one of the larger areas through which anthropologists have contributed their insights to public health via their collaboration with epidemiologists. Ethnography has allowed anthropologists to assist epidemiologists in identifying some of the specific behaviors that increase the risk of disease and the cultural norms or beliefs that promote them (Nations, 1986 cited in Brown 1998:17). One of the classic examples of this is the prominent role of anthropologists in unraveling the social etiology of kuru, an infectious disease found among the South Foré of New Guinea, which Lindenbaum (1979) considered at that time, likely to be transmitted through endocannibalistic funerary practices. While anthropologists have often been somewhat disdainful of the methods and assumptions of epidermiology itself, applied anthropologists have increasingly found ways to bridge what they view as the complimentary strengths of epidermiology and medical anthropology (Inhorn, 1995 cited in Brown 1998:17).
Kuru is a transmissible, culture specific, fatal, neurodegenerative disease with a subacute course lasting, on average, 12 months. It is restricted to the Foré people and their immediate neighbors in the Okapa District of the Eastern Highlands Province of Papua New Guinea (PNG), and belongs to the group of diseases, affecting both animals and humans, known as transmissible spongiform encephalopathies or prion diseases (Alpers, 2008) . Animal prion diseases include scrapie, a naturally occurring disease-affecting sheep and goats and the much more recently recognized bovine spongiform encephalopathy (BSE) among cattle.
Gajdusek studied kuru, and found the condition of kuru victims to be an upsetting sight. He reported three main stages in the progression of symptoms.
The first stage called the ambulant stage includes unsteadiness of stance, gait, voice, hands, and eyes; deterioration of speech; tremor; shivering and an in- coordination in lower extremities that moves slowly upward. The second stage, which he defined as the sedentary stage, consisted of having the following symptoms: patient can no longer walk without support, more extreme tremors and ataxia (loss of coordination of the muscles), shock-like muscle jerks, emotional liability, outbursts of laughter, depression, and mental slowing. The third stage is the terminal stage, which is marked by the patient’s inability to sit up without support; more severe ataxia (loss of muscle coordination), tremor, and dysarthria (slurring of speech); urinary and faecal incontinence; dysphagia (difficulty swallowing) and deep ulcerations (Gajdusek 1976)
These symptoms are generally common among prion diseases and are a result of cerebellar dysfunction.
Epidemiologically, kuru is defined by its essential clinical features of cerebellar ataxia, its subacute, progressive course and its fatal outcome (Alpers, 2008; Collinge, 2008). It was quickly recognized however, that kuru presented the problem of an infectious disease with a very long incubation period and its agents appeared to be very small compared with other viruses (Gajdusek, 1977 cited in Gajdusek, 2008). Clinical studies of patients revealed that it was non-inflammatory, and laboratory tests and neuropathology confirmed that its agent evoked no immune response (Gajdusek, 2008). Neuropathological confirmation was only obtained in a small proportion of cases but was of major significance in characterizing kuru as a transmissible spongiform encephalopathy, once cross species transmission to chimpanzee had been achieved (Fowler & Robertson, 1959; Hadlow 1959; Gajdusek, 1966, in Alpers 2008). Unlike other prion diseases however, dementia is not prominent in kuru and is characteristically thought to be absent until the late or terminal stage of the disease (Alpers, 2008).
The Foré’s experienced with the fatal epidemic kuru and their story holds the key to understanding more about the current rise of prion diseases. Their narratives about the history of kuru are told in two forms: one as a story about sorcery, knowledge and technology, from Uwami in the north to Purosa in the south, and the other in a form more readily identifiable with Western history. The first could be described as indigenous social epidemiology, providing the rationale, while in the latter, the Foré spoke of their first encounters with the disease and provided the names of the victims (Lindenbaum, 2008). Considered together, they tell the same history: Kuru as an inherent part of their life. Beginning for the Foré in the late 1920s and early 1930s with the emergence of the first disturbing cases, the question of “what causes kuru” was, to them, simple to answer. Since the South Foré had a personalistic explanation for illness, they logically assumed that Kuru was the work of witches who used contagious magic and that it is therefore one of the many forms of sorcery. Who was causing kuru and why, to them remained unknown.
Perceived at first to be cassowary disease, a benign shaking disorder thought to be caused by the encroachment of the ghosts of the dead, sufferers were administered a homeopathic mixture of pork and casuarinas bark. For a short time following this, they also called the condition negi negi, indicating silly or foolish behavior, believing that they were observing a form of temporary derangement caused by human like spirits (Lindenbaum, 2001). However, when victims began dying at regular intervals, the Foré concluded that it was the work of sorcerers. Calling the illness kuru, a word denoting shaking or fear, incorporating both biology and culture, it is an accurate description of the victim’s tremors and a term that has a certain political and social resonance (Lindenbaum, 2001).
Kuru was first drawn to the attention of Western medical specialists after being noted in the Foré tribe of the Eastern Highlands Province of Papua New Guinea while Australian administrators explored the area in 1953–1959. In August 1953 government patrol officer, W. T. Brown noticed the violent shivering and spasmodic jerking of a young girl seated by a fire The Foré said that she was a victim of sorcery and would be claimed by death within a few weeks (Lindenbaum, 1979:9). According to the Kainantu Patrol Report No 8 of 1953/54 (13 January 1954 – 20 February 1954.) he wrote, “The first sign of impending death is a general debility which is followed by general weakness and inability to stand. The victim retires to her house. She is able to take a little nourishment but suffers from violent shivering. The next stage is that the victim lies down in the house and cannot take nourishment and death eventually ensues (Brown, 2011).” The same reports described the cannibalism  practiced by the Foré people.
Although Patrol officers first formed the hypothesis, that kuru was psychosomatic, it was in the late 1950s, after the disease had reached epidemic proportions in Okapa Sub-district of the South Foré, and the neighbors with whom they intermarried, that the full extent of the disease was realized (Zigas & Gajdusek, 1959 cited in Collinge, 2008). The first medical evaluation of kuru in 1955 suggested “acute hysteria in an otherwise healthy woman” thought to be precipitated by a hysterical reaction to colonial contact (Lindenbaum, 2008). At this time, heavy metal contamination and a hysterical reaction to a fear of sorcery were also considered to be a foundation of kuru’s manifestation (Gajdusek & Sorenson, cited in Lindenbaum 2001). Though the agent was unknown, observations of kuru victims in a clinical setting led researchers, notably Gajdusek, to reject the diagnosis of psychosomaticism, based on evidence of advanced neurological disease (cited in Lindenbaum, 1979:14). They then advanced that, because of its localization in a small breeding population that, kuru had a genetic basis. Anthropologists, however, demonstrated that many of the supposed genetic relationships between victims were actually forms of fictive kinship.
Lindenbaum, tasked with investigating kinship, also recorded Foré beliefs about kuru, their accounts of the history of the epidemic and of mortuary practices and observed the treatment of kuru victims by local healers. Her genealogical investigations led researchers to document wider social structures within which kinship was situated, providing a context for interpreting the person-to-person connections inscribed on the kinship charts (Lindenbaum, 2008). Foré genealogies were short she wrote, “no more than five generations deep, two above and two below the individual providing the information. Instead of depth, they relied on lateral expansions of relatedness” (Lindenbaum, 2008). Their notion of the family was not based solely on biological grounds, but could be ‘created’ or ‘generated’ by formal proceedings between strangers with no known cosanguineal ties (Glasse & Lindenbaum, cited in Hornabrook, 1976:38-52). Foré kinship, Lindenbaum (2008) argues, can best be described as “formed by webs of attachment based on lateral extension rather than vertical depth, on optional bonding not simply biological ascription”. This created an inconsistency in the genetic hypothesis since elevated incidence rates of kuru appeared to be common among these ‘unrelated fictional kinsmen’ leading to the provisional conclusion that, based on ethnographical data, “…familial environmental factors [were] likely to have been more important than genetic factors in determining familial aggregation and individual liability to kuru’ (Glasse & Lindenbaum cited in Hornabrook, 1976:38-52). Foré genealogies were therefore, social documents that provided legitimacy to the claims and obligations of kinship. In studying these patterns, anthropologists observed that individuals from tribes that experienced little or no kuru contracted the disease when they intermarried with members of the Fore tribe and that Foré women who married out of the tribe often continued to contract kuru; however, the offspring did not. This latter observation of subsequent generations appeared to invalidate at the notion that ‘heterozygous’ individuals could suffer from kuru. In Lindenbaum’s opinion, this provided a perspective of the epidemic incompatible with the genetic hypothesis and allowed for an alternative interpretation.
Ethnographic research required for genealogical records, also recorded causes of death and confirmed Foré assertions that the disease was not of great historical depth suggesting that the arrival of kuru was related to the earlier adoption of transumption, which began in the north at the turn of the century, before later moving south (Glasse, 1963,1967; Lindenbaum, 1979). Deaths from kuru clustered in generations of young people and their parents, but were extremely rare in the next ascending generation. The Fore could name those who had died of kuru in addition to those who had participated in the consumption of deceased persons, clearly demonstrating the link between the disease and transumption (Ann Herring, 2010:326; Lindenbaum, 2008). As a result, a coherent account could be made for the appearance of disease symptoms years after the ingestion of tissue containing the transmissible agent (Mathews, 1968). Oral histories of the Foré, gathered in 1962, also relate that the epidemic of kuru was of recent origin and had spread slowly through Foré villages within living memory, and that its progress through Foré territory followed a specific, traceable route (Lindenbaum, 2008; Glasse, 1962, cited in Ann Herring, 2010:326). The generally accepted origin proposed by Alpers & Rail (1971, cited in Alpers, 2008) explained that kuru [may have] originated [early in the twentieth century in a single individual, who lived in Uwami village, a Keiagana village to their northwest of their territory] , from a spontaneous change that created a pathogenic, infectious agent in the brain, in the same way as sporadic Creutzfeldt–Jakob disease (CJD) arises. From this location the disease traveled down the eastern border to Awande and down the valley to Kasokana, then swung westward into central South Foré. From here, it turned again toward the north into the North Foré and beyond and, a little later, but most dramatically, to the South Foré and Gimi. Its appearance in the extreme south was thus relatively late, and many people gave persuasive accounts of their first encounter with the disease .
The incidence of kuru seemed to correlate with the introduction and dispersion of transumption in the south Fore region. Originally cannibalism was given a low priority or discounted perhaps because Gajdusek’s 1957 data on Foré cannibalism were inaccurate (Lindenbaum, 1982 cited in Lindenbaum, 2001), or because he thought the idea was too exotic (Rhodes, 1997:103 cited in Lindenbaum 2001). Kuru affected those who practiced transumption, namely mature and productive women. Where the practice was in decline, the incidence of kuru similarly decreased. There was a reluctance to attribute this change to the decline in ‘cannibalism’ (Alpers, 1965 cited in Alpers, 2008), however the details of the mortuary practices readily explained the sex and age distribution of kuru. Transumption was proscribed by the Australian administration as one of their first acts of ‘control’, forcing the Foré people to change their social habits . Following their intervention public feasting had ceased by the mid-1950s and the practice abandoned by the early 1960s (Alpers, 2008). The effective discouragement of the practice of transumption by the Australian authorities in the mid-1950s led to the abrupt cessation of transmission of kuru, which allowed medical researchers a unique opportunity to investigate the incubation period, a key parameter in human prion disease. Since then only a small number of old men and even fewer old women died of kuru (Mandell 1979:1442-6, cited in Crerar, 1983:64).
Numerous members of the Fore community perished before anthropologists were able to obtain the confidence of their tribal members and elicited accurate information about traditional burial practices. It was perhaps the failure of earlier medical investigators to obtain accurate information about the continued existence of endocannibalism meant that the practice was overlooked as a possible mode of transmission. Since plausible alternatives about the person-to-person spread of disease were not forthcoming, for a time the paradigm of communicable disease seemed inapplicable to kuru. Missing data about cultural practices, and the peculiar age and sex incidence of disease resulted in the appearance that young children were at equal risk of contracting the disease, while adult women were more than 14 times more likely to suffer from kuru than men within the same tribal and family units (McArthur 164; 27:341-52, cited in Cominos, 1989).
All epidemiological evidence now suggested that kuru was caused by a slow virus, transmitted through the funerary customs. Having disproved genetic inheritance as a theory; an infectious disease etiology was proposed as its replacement (Sorenson, 1976:36, cited in Crerar, 1983:64). In 1959, Hadlow proved strong similarities between scrapie and kuru (Mandell, 1979:1442-6, cited in Crerar, 1983:62) leading to attempts at cross-species inoculations from kuru infected human hosts to animals. The proven involvement of a transmissible agent in kuru meant that transumption could provide the mode of transmission of the agent rather than being the primary cause itself. In 1965, chimpanzees inoculated with kuru-infected material displayed similar symptoms to human victims of the disease, they also displayed the same post-mortem pathological changes at the time of death (Mandell, 1979:1442-6, cited in Crerar, 1983:62). Although a medical model for kuru had been found, the virus itself had not yet been isolated, until in 1957, Igor Klatzo compared kuru to Creuzfeldt-Jakod disease (Hadlow, 1959; Innes & Saunders, 1962 cited in Gajdusek, 2008). With this new information, anthropologists, by correlating those who had participated in the consumption of the deceased and those who had died of kuru, were able to piece together a reliable account of the disease’s transmission. Predominantly women, small or uninitiated  children and the elderly were exposed to the kuru virus in larger doses and more frequently since it was they who prepared possible infected corpses (both human and animal) and participated in the mortuary practices, while adult males were relatively segregated as a result of custom. Alpers and Lindenbaum’s research effectively established that kuru was able to spread easily and rapidly in the Fore people due their transumptive practices. Significantly though, it was found that not all Foré participated in the practice. Consumption of human flesh was largely limited to adult women, children of both sexes and a few adult men. According to Alpers (2008) kuru accounted for only 2% of cases in adult males.
In addition to investigating the history and transmission of kuru, Anthropologists examined the Foré experience and response to the epidemic, and how they explained it to themselves. Faced with a social and moral demographic emergency, the South Foré sought answers through a series of desperate remedies (Lindenbaum, 1979:89–116; 2008). While the Foré accurately described the symptomatology of kuru, and used this information in their classification of the disease and the name they assigned to it, Foré explanations of the aetiology differed immensely from those found in Western medical sources. The Fore discounted any notion that kuru was an infectious disease; instead they attributed its existence to an elaborate system of malevolent sorcery. During 1961 and 1962 the Fore expended large amounts of time, wealth and energy attempting to locate the sorcerers they believed to be responsible for the calamity. It was at this time the Foré began holding public meetings to denounce acts of sorcery, speak about past animosities and reveal the ideas which they felt promoted acts of aggression. Frequently though, the central issue debated at these meetings pertained to whether kuru was the result of sorcery or a form of ‘sickness’. Adoption of the term sickness did not mean that the Foré shared western medical concepts of biologically causation but rather referred to illnesses not caused by the aggressive acts of men (Lindenbaum, 2008) . Lindenbaum documents the Foré search for a resolution of the physical and social problems posed by unchecked kuru sorcerers and presents an epidemiology of social relationships by showing that Kuru is not the only disease caused by sorcerers, and sorcerers are not the only casual factor of diseases. In the Foré, sorcery still provides an explanation for many severe ailments and misfortunes. This has become a belief inscribed in the Sorcery Act of 1971, which is now part of the Revised Laws of the Independent State of Papua New Guinea. These laws define acts of sorcery to be illegal.
The combination of evolutionary theory with the ecological model has provided insights into the long-term genetic implications for human hosts of exposure to other epidemic agents particularly through the interdisciplinary investigation of Kuru (Joralemon 2010:36). When medical scientists first described kuru in 1957, it was a complete mystery, by 1967, it had been “solved”: kuru was a transmissible spongiform encephalopathy (TSE) transmitted by means of transumption. Today, kuru still remains the principal human epidemic prion disease and although it is now considered to have died out and the epidemic, declared at an end , the emergence of variant Creutzfeldt–Jakob disease (vCJD) has given kuru a new global relevance. It cannot be denied that the identification and classification of kuru disease, was the result of many years of medical and anthropological investigation and scientific testing. Anthropological analysis of the spread of kuru, the native endocannibalistic funerary practices, the social-cultural effects of disease, the life of women and children, the kinship system of the Foré and their willingness to incorporate outsiders into it, their folk law and their histories as well as the histories of their neighbors, sorcery as a social phenomenon and as a method of explaining the causation of disease and the concepts of its treatment cannot be undervalued. Anthropologists and medical investigators, although they did not bring an end to the epidemic, the multidisciplinary scientific approach of both has culminated in the provision of the most plausible hypothesis for the aetiology and epidemiology of the disease. Scientific understanding of the transmission methods and nature of the infectious agent was the result of joint endeavors of anthropology and medicine. The reconsideration of kuru highlights the importance of an anthropologically sound approach to the control of infectious disease.
 Prusiner first coined the term “prion” in 1982.
 Owing to the derogatory connotations of the word ‘cannibalism’, which are improves only slightly by the more technical ‘endocannibalism’, the term ‘transumption’ has been adopted to describe the culturally specific ritual for the disposal of the dead practiced by the Fore and their neighbors. Transumption is as defined by Alpers (2007:14) ‘the mortuary practice of consumption of the dead and incorporation of the body of the dead person into the bodies of living relatives, thus helping to free the spirit of the dead’.
 Additions noted from Lindenbaum, 1979
 Glasse (1962) and Mathews (1965) have described the historical spread of kuru.
 See appendix 1
 The initiation of most males of the tribes took place at approximately 10 years of age. Following this they moved to the communal men’s house, where like other older males they were relatively segregated.
 Lindenbaum (2008) writes that “Non-sorcery-caused ailments were often said to be caused by encroachments against nature spirits, ghosts of the recently dead or angry neighbors, all of who could be given compensation payments in order to find relief”
 The last known kuru sufferer died in 2005
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While there may have been some degree of official opprobrium regarding the practice, cannibalism was never explicitly outlawed in New Guinea during the 1950s. The only references to corpses in the Queensland Criminal Code, which was enacted in 1899 and adopted by the Government of Papua in 1902, are as follows:
[Sections governing] misconduct relating to corpses [provide that] … any person who, without lawful justification or excuse, the proof of which lies on him, improperly or indecently interferes with … any dead human body … is guilty of a misdemeanor and is liable to imprisonment with hard labor for two years. Improperly or indecently interfering with, or offer [ing] any indignity to, any dead human body or human remains [is also prohibited].
(Queensland Criminal Code Act 1899, Chapter 23 / Section 230b p. 153)
This clearly negate assertion of ‘rigorous control by the state, of a single form of deviant social behaviour’ (Seale, 1987; 80:200-2 cited in Cominos, 1989) While there is no reference to actual cannibalism in the Queensland Code, occasionally endocannibals were prosecuted, principally as body snatchers (Griffin, 1971; 1:79-81, cited in Cominos, 1989).