Kuru Research Research Articles

Discovery of Kuru Revisited: How Anthropology Hindered Then Enhanced Kuru Research

Kuru has probably spawned more papers and books than any other uncommon disease, and produced two Nobel laureates. This rapidly progressive and inevitably fatal neurological condition occurred only among people in the Okapa area of Papua New Guinea. It had an extraordinarily long incubation period. Genealogical studies determined that kuru probably appeared in the fi rst decade of the twentieth century and was spread by cannibalism. This paper reviews the chronological sequence of the earliest reports of kuru and documents how early fi xation on sorcery as the mechanism for the illness diverted attention from a medical description and discovery of the mode of transmission of the disease. A multidisciplinary approach by anthropologists, epidemiologists and microbiologists fi nally led to the elucidation of its aetiology. Only three thousand cases have been documented and there have been no cases reported since 2009.

Discovery of Kuru Revisited: How Anthropology Hindered Then Enhanced Kuru Research

Discovery of Kuru Revisited: How Anthropology Hindered Then Enhanced Kuru Research

Objectivity and its discontents

In my 2008 book, The Collectors of Lost Souls, I told the story of the medical investigation of kuru, a fatal brain disease afflicting the Fore people of New Guinea during the middle of the 20th century. The story involved sorcery accusations, cannibalism, first contact, colonial incursions, scientific rivalry, alleged sexual molestation, and two Nobel Prizes in Physiology or Medicine. There can be little doubt that kuru, because of its peculiarities, has proven exceptionally ‘good to think with’—in infectious diseases research, medical anthropology and the history of science. Here, I attempt a cultural history of valuation in kuru research, hoping thus to make a tentative contribution to a theory of value in modern science. It is important to distinguish this project from functionalist and normative analyses predicated on conceptions of social structure and solidarity. Instead, I want to look at the inter-subjective mobilization and modulation of desire in scientific work, thus focusing on multiple agency, more than structure, in the making or perception of value. Like John Dewey, and his teacher Georg Simmel, I am most interested in how experiences of self-formation generate or reveal value commitments; that is, I am interested in how interaction, or opening ourselves to others, can form and make visible our values and valuables. In this spirit, I want to attend to the commitments to subjects and objects that emerge through cultural contact and exchange in scientific research.

Tensions in the Field: The Politics of Researching Kuru in New Guinea

This paper explores the politics of field research affecting the investigation of an unknown fatal disease (kuru) that afflicted the Fore people of the Eastern Highlands of New Guinea. From its outset in 1957, the kuru inquiry was characterized by professional rivalries and political manoeuvring. At the centre of the political jostling was the chauvinistic resentment of Australian scientists over the presence and activities of an American researcher, Carleton Gajdusek. Increasing tensions prompted the regulation of kuru research through the appointment in 1963 of a New Zealand neurologist, Richard Hornabrook, as the Chief Clinical Investigator. Against the background of earlier tensions, the paper examines the relationship between Gajdusek and Hornabrook as an illustration of the politics of research.

The Collectors of Lost Souls: Turning Kuru Scientists into White Men (Anderson, W.; 2008) [Book Reviews

This book is a history of the search for the causes of kuru, a malady affecting women and children among the Fore people in the remote Eastern Highlands of New Guinea. Anderson is interested in the ways the story of kuru research reveals the "'primitive' foundations of modern science."

Reminiscences and reflections on kuru, personal and scientific

These reminiscences and reflections are about kuru, its effect on the people who suffered from the disease, the research into kuru over a period of 50 years, and the scientists, doctors and others whose dedicated work led to the solution of this mysterious and devastating disease.

Introduction

Introduction

The expanded Laboratory of Collaborative and Field Research

Along with David Asher and Richard Benfante, who also attended the End of Kuru conference, I spoke there as a member of the wandering and far-flung community of Carleton Gajdusek's Bethesda Laboratory at the National Institutes of Health (NIH). I worked there, originally talking my way into a clerical job, despite having no particular qualifications, as a ‘social science analyst’ from 1967 to the mid-1970s; I tend to think of my job description throughout, however, as ‘handmaiden’. For years I worked on whatever came to hand, or whatever was thrust into my hands by Carleton. After I left the laboratory to go to graduate school in anthropology, I edited with Carleton the volume called Kuru: Correspondence and Field Notes from the Collection of D. Carleton Gajdusek. Since then I have been working on health and medicine in China as a social anthropologist, teaching and doing research in Chicago, North Carolina and Beijing. Like many nostalgic historians and travellers who can claim many homes, like Carleton, even, I have a very partial, very personally motivated version of that place and time. Still, because Carleton, kuru, its scientists and the laboratory had such an important role in my own formation as a person, it interests me to ask: ‘What was kuru from the point of view of the laboratory? What kind of a place was the laboratory?’ My answers to these questions have become broader and vaguer over the years but my interest in understanding this past is no less intense than it ever was.

My kuru adventure

During my first employment as a Medical Officer in the Public Health Service of the Territory of Papua and New Guinea, I was, after an induction period in Goroka, offered a posting to Okapa for several months. I was accompanied by my wife Theresa and our 18-month-old son. The pilot who flew us there

‘Most people still believe that kuru is caused by sorcery’

Open AccessMoreSectionsView PDF ToolsAdd to favoritesDownload CitationsTrack Citations ShareShare onFacebookTwitterLinked InRedditEmail Cite this article Puwa Anderson 2008‘Most people still believe that kuru is caused by sorcery’Phil. Trans. R. Soc. B3633656http://doi.org/10.1098/rstb.2008.4025SectionOpen AccessArticles‘Most people still believe that kuru is caused by sorcery’ Anderson Puwa Anderson Puwa Google Scholar Find this author on PubMed Search for more papers by this author Anderson Puwa Anderson Puwa Google Scholar Find this author on PubMed Search for more papers by this author Published:27 November 2008https://doi.org/10.1098/rstb.2008.4025This is the second time I have come to England to the MRC Prion Unit. I have been working for the Kuru Research Project in the Papua New Guinea Institute of Medical Research for 6 years. Now, I am the Community Liaison Officer. I am also the community leader of Waisa Village. In our kuru studies, I work closely with Jerome Whitfield and Michael Alpers.In the early 1960s, when I first saw Michael Alpers in Waisa, I was 7 years old. Michael has always been a good friend of our family. The kuru research work went ahead successfully. Later Michael became the Director of the Papua New Guinea Institute of Medical Research. The Institute studies all the sicknesses of Papua New Guinea and we are pleased to have Prof. Peter Siba now as its Director.My late father Mr Puwa helped Michael with his work and supported him personally. He assisted with the examination of patients and the collection of samples from patients and others. He explained to the family and community why these samples of blood, brain and the like were needed. Working together, my father and Michael made a film on traditional salt making, a skill and technology that has now died out, since my father was the acknowledged salt maker of the village.Although most people still believe that kuru is caused by sorcery, there are a few of us who understand how it came to our people. I am very happy about all the research work for the last 50 years that has given us this understanding. Previous ArticleNext Article VIEW FULL TEXT DOWNLOAD PDF FiguresRelatedReferencesDetailsCited byCollinge J and Alpers M (2008) Introduction, Philosophical Transactions of the Royal Society B: Biological Sciences, 363:1510, (3607-3612), Online publication date: 27-Nov-2008. This Issue27 November 2008Volume 363Issue 1510Theme Issue ‘The end of kuru: 50 years of research into an extraordinary disease’ compiled by John Collinge and Michael P. Alpers Article InformationDOI:https://doi.org/10.1098/rstb.2008.4025Published by:Royal SocietyPrint ISSN:0962-8436Online ISSN:1471-2970History: Published online27/11/2008Published in print27/11/2008 License:Copyright © 2008 The Royal SocietyThis is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Citations and impact Subjectshealth and disease and epidemiology

Review. Lessons of kuru research: background to recent studies with some personal reflections.

The widespread exposure of the UK population to bovine spongiform encephalopathy prions, and the potential consequences for public health, led to a renewed interest in kuru, the principal example of epidemic human prion disease. Kuru research in Papua New Guinea was expanded to study the range of incubation periods possible in human prion infection, to investigate maternal and other possible natural routes of transmission, to characterize genetic susceptibility and resistance factors and to gain insights into the peripheral pathogenesis of orally acquired prion disease in humans. Although now essentially over, the kuru epidemic continues to provide important lessons.

My ‘brush’ with kuru research

In November 1966, I received, to my surprise, formalin-fixed pieces of brain tissue from a young kuru patient (Tabaso, female, 12 years) from Dr Michael Alpers at the NIH with the request for electron microscopy (EM). At that time, I was engaged in EM studies of infectious diseases of the central

We see what we are trained to see, or must we? Some personal lessons from a brush with kuru research

It began in 1957 when I received via a colleague a batch of sera from kuru patients and some controls from Carleton Gajdusek. I was immensely excited, as was Carleton, when I found a quite remarkable elevation of some α and β globulin components in the kuru sera that seemed to be absent from the controls. However, our excitement cooled in the face of more data that indicated that the sera in question had come from very sick, malnourished people suffering from major intercurrent infections, decubitus ulcers and the like. That is, we were observing a reactive hyperglobulinaemia, an epiphenomenon rather than a finding central to kuru. My overreaction to the initial finding was almost certainly due to the fact that at the time I was very interested in the paraproteinaemias of myeloma and other malignancies of the immune system and was ready to put down our kuru findings to some unique dysproteinaemia. So, the first great lesson that dipping into kuru research taught me was that we see what we are trained to see.

‘My adopted daughter and then my second wife died of kuru’

I was in my thirties and had a son by the name of Anua when Dr Carleton Gajdusek came into the Purosa Valley to do research on kuru. Carleton picked Anua from among the boys to work with him. When Carleton, Anua and others went on patrol, I assisted them by carrying field equipment and rations for two to three weeks. I also assisted by explaining to the village people why we were there in their village, how we wanted to examine the sick kuru patients and what help we tried to give them. I was asked by Carleton to stay back in the village to take care of his house and equipment. After 3 years, my adopted daughter and then my second wife died of kuru, so I gave up my job to take care of the children left behind. I am pleased that the Kuru Project is continuing the kuru research work with the people of Okapa. The two main groups, the Atigina and the Pamusagina, have worked hard and assisted the medical scientific officers in their studies from the beginning and they continue to assist the kuru research workers today. Now I am working with Michael Alpers and Jerome Whitfield to research the stories of our ancestors and the cultural practices of the Pamusa people.

Some tributes to research colleagues and other contributors to our knowledge about kuru

At the meeting at the Royal Society on ‘The end of kuru: 50 years of research into an extraordinary disease’, we celebrated the impending end of the kuru epidemic and the achievements of many people who had worked on kuru over the last 50 years. Especially honoured were our two Nobel laureates,

The work of the Kuru Field Unit, Kuru Research Project of the Papua New Guinea Institute of Medical Research and MRC Prion Unit

This is my third year working for the Kuru Research Project and I have been assigned to take charge of the fieldwork. Our fieldwork is based in Waisa village and we have nine field patrol officers who make five teams for kuru surveillance right around the four corners of Okapa District. There are two technical officers based in the field transcribing interview tapes recorded by Jerome Whitfield, Sena Anua and myself. One patient, a man aged 62 years, died of kuru in March 2005. There were 14 suspected cases of kuru from January 2005 to September 2007: five suspected kuru patients have ‘recovered’ and are well; five suspected kuru patients are still sick with no change of symptoms and are diagnosed as not having kuru; and four suspected kuru patients have died from other disease. The other responsibilities in the field are: Arrange field patrols for kuru surveillance of villages in remote parts of the kuru-affected region every quarter and prepare a report. Assist Jerome Whitfield in conducting interviews on the cultural and mortuary practices of the Atigina and Pamusagina people. Diagnose and film suspected kuru patients and compile reports for Jerome and Michael Alpers. Check and regularly report on the sickness status of suspected kuru patients. Transcribe recorded tapes from the Fore language into English.

The changing face of kuru: a personal perspective

The epidemic of kuru is now known to have been transmitted among the Fore by ritual consumption of infected organs from deceased relatives. As cannibalism was suppressed by government patrol officers during the 1950s, most transmission had ceased by 1957, when the kuru research programme first commenced. As predicted in the 1960s, the epidemic has waned, with progressive ageing of kuru-affected cohorts over the years to 2007. The few cases seen in the twenty-first century, with the longest incubation periods, were almost certainly exposed as children prior to 1960. Although the research programme had almost no role in bringing the kuru epidemic to an end, it did provide important knowledge that was to help the wider world in controlling the later epidemics of iatrogenic and variant Creutzfeldt–Jakob disease and bovine spongiform encephalopathy.

Work among the people of the Okapa area from 1996 to the present

I have conducted fieldwork on kuru, with colleagues from the MRC Prion Unit and the Papua New Guinea Institute of Medical Research (PNGIMR), since 1996. During this time, the fieldwork has been dependent on the support of the PNGIMR, and I thank the staff and the past and present Directors, Michael Alpers, John Reeder and Peter Siba, for their support. Michael's vast knowledge and experience of Papua New Guinea has been invaluable and inspirational. I also thank my Papua New Guinean friends whose counsel has guided me through the occasional turbulent time. In particular, I thank Dr Inoni Betuela, Dr Ken Boone and his wife Lisa, Samson Akunaii, Anderson Puwa and Henry Pako. The members of the Kuru Project, past and present, have made a significant contribution to the success of the Project, and though I will not name them individually, it is important that their contributions be acknowledged in these proceedings. The collaboration of the local communities in 22 linguistic groups has allowed us to collect over 4000 blood samples, other specimens and interviews. Their participation has been generous and, without it, our knowledge of prion diseases would be more limited. The Papua New Guineans who attended the meeting represented all those people from Papua New Guinea who have assisted in the research on kuru over many years. Kuru is no longer a priority for the people affected: their health concerns are now focused on diseases that are no longer common in wealthy countries and on the emerging AIDS epidemic. For the duration of the project, we have tried to provide medical care where possible and to source external funding for development projects. The team's work is part of the ongoing research started by Vincent Zigas and Carleton Gajdusek in 1957 and there are many others, including some of those attending the meeting, who were the pioneers of kuru research. Much of the current research success has been dependent on the goodwill and integrity shown by the pioneers to the people of the kuru-affected region and to the long-term relationships established early on with those populations. We have tried as much as possible to follow the example set by the early research workers. I also thank John Collinge, Frank Cooper and the staff at the MRC Prion Unit. There have also been other members of the MRC Prion Unit who have assisted in the fieldwork: Edward McKintosh, Skip Jackson, Toby Bentley, Edward Lagan and, most recently, Dafydd Thomas, who assisted with the clinical examination of patients. I thank the Wellcome Trust for initially funding the project and, more recently, the Medical Research Council for funding support, the Life Neurological Trust for making a generous donation to the local preschools and the British High Commission in Port Moresby for funding the Okapa District Water Supply Project. Finally, I would like to emphasize that the PNGIMR has contributed, and continues to contribute, to medical research at an international level, supports the annual Medical Symposium in PNG and publishes the PNG Medical Journal. It is important that the world sees Papua New Guinea in the positive light that it deserves.

‘The people in every village they visited were so often mourning the dead’

I was still young and unmarried when Michael Alpers came into Waisa village in 1962 to live there and do research on kuru, which was taking the lives of the people at an alarming rate. I was among the young girls who cleaned up the land to build his house at Yagoenti. My late husband Mr Mabage was a single young man when Michael employed him. He helped in the house and whenever Michael wanted to go out on field patrol he went with him. He was a very handy man in doing fieldwork. He was also asked to go independently to check on kuru patients and report back whenever the symptoms of kuru had changed in the patients. When the medical scientists ran out of food they survived on local vegetables provided by staff members and village people. It was not an easy job in the early days of kuru research, when the people in every village they visited were so often mourning the dead. The staff were kept busy all the time collecting samples and helping the relatives in the funerals of patients. When the research officers left the country my late husband was retrenched and we lived a happy life in Waisa until he died of kuru in 1980.