Tuberculosis: more anthropologists wanted
If tuberculosis (TB) is so often described as the quintessential social disease, why aren’t more researchers in the social sciences and humanities studying this global problem? Anthropologists are able to add valuably to research design and public policy in diverse cultural settings. A volume on Anthropology of infectious disease by Peter Brown and Marcia Inhorn highlights some of anthropology’s key lessons when it comes to infection and disease–lessons that anthropologists should be applying more liberally to the problem of TB around the world. TB remains second only to AIDS as the biggest infectious killer in the world despite the availability of effective treatment. Almost a hundred years ago, Halilday Sutherland, a protegé of Sir Robert Philip, expressed in a 1917 speech that the largest obstacles to the elimination of tuberculosis were man-made. Cultural barriers, poverty, and the unequal distribution of resources remain the biggest hurdles that need to be overcome to combat the spread of this infectious airborne disease. Developing the cultural competency of healthworkers around the world, engaging constructively with local communities, and creating more highly targeted communication strategies is key to the effective delivery of antibiotic treatment for TB. More qualitative research is needed. Here is a list of a selection of social scientists with an active program of research studying TB include:
- Kate Abney, University of Capetown
- Ramila Bisht, Jawaharlal Nehru University
- Oriana Bras, Universidade da Lisboa
- Dr Helen Bynum, Author of Spitting Blood
- Emilio Dirlikov, Dept. of Anthropology, McGill University
- Justin Dixon, Durham University
- Dr Nora Engel from Maastricht University,
- Dr Ian Harper from the University of Edinburgh,
- Dr Erin Koch from the University of Kentucky,
- Dr Helen MacDonald, University of Capetown
- Andrew McDowell at McGill University
- Dr Thu Anh Nguyen from the Woolcock Institute, Hanoi.
- Dr Jessica Ogden from the International Centre for Research on Women and the London School of Hygiene and Tropical Medicine,
- Drs Julie Park and Judith Littleton from the University of Auckland,
- Paula Saravia, University of California San Diego
- Dr Jens Seeberg, Aarhus University
- Dr Christianne Stephens, York University
- Jonathan Stillo, CUNY
- Carina Truyts, University of Capetown
- Elisa Vasconi, L’Universita di Siena
- Bharat Venkat, Princeton University
- Laura Winterton from the University of Edinburgh,
Books on TB written by anthropologists are few and far between with Erin Koch recently publishing Free Market Tuberculosis (reviewed by Erica Johnson, Kate Thomson, Jennifer Carroll, Paul Mason), Ian Harper contributing to a Routledge South Asian Studies series with Development and Public Health in the Himalaya: Reflections on healing in Contemporary Nepal (in particular see chapter 8: Creating Order from Treatment Chaos: Implementing Protocols and the Control of Tuberculosis), and Dr Nora Engel who will be releasing her book with Orient Blackswan hopefully later this year.
Other anthropologists who have contributed to discussions of TB include:
- Todd Pickett and Paul Farmer who have written about TB in Russian prisons;
- Dr Christianne Stephens from York University who has an interesting article on TB in Totem;
- Lorenza Menegoni writing about TB in Mexico;
- Lukas Engelmann and Janina Kehr who have written about TB and HIV coinfection
- Robin J. Shrestha-Kuwahara and colleagues have written with an anthropological sensibility about Tuberculosis Research and Control, Perceptions of TB among immigrants and refugees, a chapter on TB in the Encyclopedia of Medical Anthropology, and a number of research papers about contact investigations;
- Stacie D.A. Burke who wrote Tuberculosis: Past and Present in Reviews of Anthropology;
- Linda Green‘s chapters in Confronting Capital and Violence Expressed;
- Paul Farmer’s Sydney Mintz lecture published in Current Anthropology;
- Arthur Rubel & Carmello Moore who wrote an intriguing comparative study of Susto and TB;
- Lauren Moschetta-Gilbert on TB and cultural competency;
- Ming-Jung Ho who has written about TB and migration as well as a review article about the sociocultural aspects of TB in Social Science and Medicine;
- Moustapha Ould Taleb who has worked on representations of TB among Nomadic people in Mauritania and Chad
- Lora L. Wyss and M. Kay Alderman draw upon seven years of research in a discussion of beliefs about TB among migrant farm workers in the Midwestern United States;
- Jed Horner from the University of New South Wales who, while not an anthropologist, has written a couple of articles with colleagues about the conflation of public health and national security concerns in TB and Border Control in Critical Public Health and New Political Science;
- Dr Knut Lönnroth, a medical doctor at the WHO STOP TB partnership, who is also not an anthropologist but has written over 70 articles with a keen awareness of social factors.
The geographical areas covered by anthropologists working on tuberculosis include Georgia, Haiti, India, Nepal, New Zealand, Cape Town in South Africa, Rwanda, and Vietnam. By this count, only four of the countries on the WHO’s list of 22 countries with a high burden of TB are covered by anthropologists. The 22 countries with a high burden of TB don’t cover countries like Kirribati that have a small population but a high incidence of TB, but Wouldn’t it be great if we could put an anthropologist specifically working on TB in each of the 22 countries with a high burden of TB? Of course, a single anthropologist might not be enough in these densely populated countries and anthropologists working in smaller countries with high TB incidence is also necessary, but such a preliminary initiative in the 22 high TB burden countries would be a commendable start! Anthropologists have a lot to contribute to Public Health Policy and Practice.
Here is the list of 22 countries with a high burden of TB:
- 1 – Afghanistan
- 2 – Bangladesh
- 3 – Brazil
- 4 – Cambodia
- 5 – China
- 6 – Democratic Republic of Congo
- 7 – Ethiopia
- 8 – India
- 9 – Indonesia
- 10 – Kenya
- 11 – Mozambique
- 12 – Myanmar
- 13 – Nigeria
- 14 – Pakistan
- 15 – The Philippines
- 16 – Russia
- 17 – South Africa
- 18 – United Republic of Tanzania
- 19 – Thailand
- 20 – Uganda
- 21 – Vietnam
- 22 – Zimbabwe
Growing up in Australia where rates of TB are relatively low (and before the time that Christiaan Van Vuuren became famous), I knew very little about the TB problem that burdens a large number of countries throughout the Asia Pacific region and beyond. It was only through fieldwork in Indonesia, Brazil and India that I began to realise the vastness of the global TB problem. I began working in TB research just over a year ago and am currently working alongside Dr Thu Anh Nguyen and a TB screening team in Vietnam –a project that was recently featured in the STOP TB partnership newsletter. Rates of tuberculosis in the region where we are screening are around 1 in 300, and almost ten times higher in prisons. I am investigating TB control and prevention strategies in the Mekong Delta. Together with my research assistant Dinh Thi Nhung, we have interviewed over forty people with TB and conducted focus group discussions in several villages throughout the region. But our work is ongoing and we still have a lot more interviews to conduct.
In developing this program of research, I have co-authored an article published in the Journal of Biosocial Science, reviewed several books on TB, written a couple of blog posts (one about World TB day, another about TB in prisons and yet another about Ravindra Patil), published an information piece on Tuberculosis for Fieldworkers in the Australian Anthropology Society Newsletter, and I have also written a piece called “The Liminal Body“, which is a response to a case study of Latent Tuberculosis Infection (LTBI) described by Ian Kerridge and Justin Denholm in the Journal of Bioethical Inquiry. I have also delivered a number of presentations that are available online:
- 19th and 21st Century Consumption: The Growth of Structural Violence Against Diversity at the State, Society, Stigma: Rethinking Disease in a Global Age conference at LaTrobe
- Health Promotion by Social Cognitive Means: Self-efficacy among TB patients in Vietnam at the University of Sydney
- Connecting the Dots: Tracing Translocal Networks of Tuberculosis Control at the Woolcock Institute of Medical Research
- Pilgrimages of Health: Mapping the Moral Terrain of Tuberculosis, at the Tuberculosis Control Symposium
- Constellations of Pulmonary Citizenship: Tuberculosis, latent infection, active disease, co-infection, and at-risk populations at the Biopolitics of Science and Medicine Symposium at Monash University
- Tuberculosis: Seven concepts from the social model at the Woolcock Institute
- Tuberculosis: A dynamic systems mapping approach at the Tuberculosis Centre for Research Excellence
- and coming shortly, Coping Self-efficacy for Tuberculosis Treatment in Ca Mau, Vietnam, at the 5th Conference of The Union Asia Pacific Region
The following items are some lists of resources that I have been compiling on the social, ethical and historical dimensions of TB.
Ethics and Tuberculosis:
- John Porter and Jessica Ogden: http://ijme.in/~ijmein/index.php/ijme/article/view/1486/3236
- TB in India: http://www.issuesinmedicalethics.org/~ijmein/index.php/ijme/article/view/930
- Ethics, Autonomy, and TB treatment http://www.scu.edu/ethics/publications/submitted/tuberculosis.html
- XDR TB in India: http://www.issuesinmedicalethics.org/~ijmein/index.php/ijme/article/view/932
- Ethics of DOTS: http://www.biomedcentral.com/1472-6939/14/25
- Ethics, Tuberculosis and Globalisation: http://phe.oxfordjournals.org/content/1/1/10.full
- At the Centre for Bioethics, Solomon R. Benatar and Ross Upshur have both worked on TB.
- Critical Reflections on Evidence, Ethics and effectiveness in the management of tuberculosis: public health and global perspectives: http://www.ncbi.nlm.nih.gov/pubmed/15113419
Please write a comment below if you know of other work on Ethics and TB.
Tuberculosis and Migration
In addition to the work of Judith Littleton and Julie Roberts on TB and immigration in NZ and Jed Horner’s work in Australia, here’s a short list of other interesting links and articles:
- TB and migration in Canada: http://link.springer.com/article/10.1007/s10903-011-9506-1
- Screening migrants for TB in France and Germany: http://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2011.01415.x/full
- (Re)locating the Boder: http://www.sciencedirect.com/science/article/pii/S0016718513000961
- Female Somali refugees in the UK: http://etheses.whiterose.ac.uk/3829/
- Migratory Journeys and TB Risk: http://www.jstor.org/discover/10.2307/3655346?uid=3739320&uid=2&uid=4&sid=21104557264673
- Special issue of Annals of Anthropological Practice on Migration and Health: http://onlinelibrary.wiley.com/doi/10.1111/napa.2010.34.issue-1/issuetoc
Gender and TB
- http://www.tuberculosisjournal.com/article/S1472-9792(12)00199-0/fulltext
- Pakistan: http://www.jpma.org.pk/supplement_details.php?article_id=109
- Case detection: http://www.ncbi.nlm.nih.gov/pubmed/10694090
- Social Determinants of TB: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3052350/
- Gender and community views of stigma: http://www.ncbi.nlm.nih.gov/pubmed/21509994
- Borgdorff MW1, Nagelkerke NJ, Dye C, Nunn P. (2000) Gender and tuberculosis: a comparison of prevalence surveys with notification data to explore sex differences in case detection, Int J Tuberc Lung Dis. 4(2):123-32.
- Codlin, A.J., Khowaja, S., Chen, Z., Rahbar, M.H., Qadeer, E., McCormick, J.B., Ara, I., Fisher-Hoch, S.P., Khan, A.J., (2013) Short Report: Gender Differences in Tuberculosis Notification in Pakistan, Journal of Pakistan Medical Association.
- Diwan, V. K., & Thorson, A. (1999). Sex, gender, and tuberculosis. The Lancet, 353(9157), 1000 –1001.
- Dolin P. (1998) Tuberculosis epidemiology from a gender perspective. In Diwan VK, Thorson A, Winkwist A. (Eds) Gender and Tuberculosis: An international research workshop. May 24-26, 1998. The Nordic School of Public Health, Goteborg, Sweden.
- Hudelson, P. (1996). Gender differentials in tuberculosis: The role of socio-economic and cultural factors. Tubercle & Lung Disease, 77(5), 391–400.
- Kandrack, MA., Grant KR., Segall A. 1991. Gender differences in health related behaviour: some unanswered questions. Soc Sci Med 32(5): 579 – 590.
- Nair et al. (1997) Tuberculosis in Bombay.
- Neyrolles, O., Quintana-Murci, Lluis (2009) Sexual Inequality in Tuberculosis, PLoS Medicine.
- Ngamvithayapong-Yanai J, Puangrassami P, Yanai H. 1998. Compliance to tuberculosis treatment: A gender perspective. In Diwan VK, Thorson A, Winkvist A (Ed). 1998. Gender and Tuberculosis: An international research workshop. May 24-26, 1998. The Nordic School of Public Health, Goteborg, Sweden.
- Rangan S, Uplekar M. (1998) Gender perspectives of access to health and Tuberculosis care. In Diwan VK, Thorson A, Winkvist A (Eds). 1998. Gender and Tuberculosis: An international research workshop. May 24-26, 1998. The Nordic School of Public Health, Goteborg, Sweden.
- Rhines, A.S. The role of sex differences in the prevalence and transmission of tuberculosis, Tuberculosis, 93(1), 104-107.
- Uplekar, M. W., Rangan, S., Weiss, M., Ogden, J. A., Borgdorff, M. W., & Hudelson, P. (2001). Attention to gender issues in tuberculosis control. International Journal of Tuberculosis & Lung Disease, 5(3), 220–224.
Please feel free to add other interesting articles on gender and TB in the comments section below.
History of Tuberculosis
For anyone looking to learn more about TB, history is a great place to start and I highly reccomend the following books and resources:
- Spitting Blood written by Helen Bynum (reviewed by Richard Horton, Richard J. Evans, J Welshman, Paul Mason)
- The Ailing City by Diego Armus (reviewed by Carlos S Dimas, Y Eraso, Donna J Guy, Paul Mason)
- Circe’s Island by Isabel Gillard (reviewed by Carole Reeves, Rosalind Stanwell-Smith, and Paul Mason)
- Contagion and Confinement by Dr Barron Lerner
- The Remedy by Robert Arthur
- Experiment Eleven by Peter Pringle
- Holloway, K.L., Staub, K., Rühli, F., Henneberg, M. (2014) Lessons from History of Socioeconomic Improvements: A new approach to treating multi-drug resistant tuberculosis. Journal of Biosocial Science, 46(5), 600-620.
- Tuberculosis in France: Repairing the body, restoring the soul: the Sea Hospital of the City of Paris in Berck‐sur‐Mer and the French war on tuberculosis
- Tuberculosis in The Netherlands: Fresh air and good food: children and the anti‐tuberculosis campaign in the Netherlands c.1900–1940 and The dangers of schooling: the introduction of school medical inspection in the Netherlands (c.1900)
- Tuberculosis: Then and Now
- Nature piece on Robert Koch.
- The Making of a Social Disease
- William Johnston’s The Modern Epidemic: A History of Tuberculosis in Japan reviewed by William W. Stead, Paul Weindling, Carol Benedict, and F.B. Smith.
- Finally, the Wellcome Witnesses to Contemporary Medicine has some great resources such as this publication on Poverty and Tuberculosis from 1912 and this book called Lessons on Tuberculosis and Consumption for the household.
If you have read an interesting history of TB, please let us know in the comments section below.
TB and the Brain
An intriguing hypothesis about the coevolution of big brains, meat consumption and tuberculosis written by Adrian Williams and Robin Dunbar and published in The International Journal of Tryptophan Research (2013), Medical Hypostheses (2014) and New Scientist. Their thoughts about famine and TB are really insightful:
“The situation in North Korea is a current case in point where a sevenfold rise in TB, including drug-resistant forms, is unanimously agreed to have its origin in a recent epic famine… yet, it is the TB, not the neglect of diet, that is being described as “Public Enemy Number One.”
Perhaps Williams and Dunbar are going out on a limb by referring to the TB-human relationship as co-evolutionary, but the idea of symbiosis is interesting to entertain. While TB might be able to fulfil a metabolic need for energy under select circumstances, this does not necessarily mean this is how humans and TB co-evolved. Nonetheless, one thing I do like about these papers is that they take a more interconnected view of the human-microbe relationship that is not being theoretically played with enough. The singular focus of seeing TB as something that needs to be eradicated might be skewed. Western approaches do seem to obsess about eliminating as many microbes in the environment and body as we can. However, understanding human-microbe interactions more intimately might reframe our approach toward “population health” and not just “TB elimination”.
TB on WordPress:
- Social Effects of TB in Southwest Alaska
- World TB Day
- Unitat de Tuberculosi
- TB in Canada
- TB and Evolution
- TB and Diabetes
- TB graves
- Tentang TBC dalam Bahasa Indonesia
- Tuberculosis in Espanol
- Low-cost TB test
- TB elimination
- World TB day
- MDR TB and millienium development goals
- Bill and Melinda talk TB and not-for-profit activity
- Review of The Remedy by Thomas Goetz
- TB in elephants
- A family’s story with TB, part 1, part 2, part 3
- History of the Mantoux Test
- TB in Japan
- TB awareness in South Africa
- A disease with social connotations
- A new target tuberculosis
- Diabetes and TB a double burden
- Weaponizing Anthropology‘
- Social Effects of TB in Southwest Alaska
- TB/HIV: Distinct Histories, Entangled Futures. Towards an Epistemology of Co-infection
- Microbes and Anthropology
- Conference Synopsis: The End of biodetermism? New Directions for Medical Anthropology
TB on the big screen:
Kate Abney’s Tedx Talk about paediatric TB is great.
Trapper diagnoses a case of tuberculosis in a 1975 episode of M*A*S*H called “Love and Marriage“. In episode 4 of season 2 of House, a patient, himself a doctor, presents with TB. Do you know any television shows that feature TB? A spanish site, Revista Medicina Cine, offers a very comprehensive review of over 400 movies where tuberculosis has been portrayed.
Winter’s Tale is a 2014 movie about Peter Lake (Colin Farrell) who falls in love with the consumptive Beverly Penn (Jessica Findlay). Antiobiotic treatment is not yet available, and Beverly’s only recourse is the cold air cure. Peter fails to save Beverly, gets pushed off a bridge, and lives a hundred years without aging but suffering from amnesia. At the end of the movie (spoiler alert) Peter brings a miracle cure to a cancer patient. I wonder if the scriptwriters or the novelist Mark Helprin had read Susan Sontag’s Illness as Metaphor prior to drafting this tale. If anyone knows of any television shows or movies that depict TB in any form, please comment below.
Hi, thank-you for quoting from “Consumption its cause and cure” by Halliday Sutherland. I did want to let you know that there was a typo in his first name, but that is not the main reason I am contacting you.
I listened to a podcast of “In Our Time” a BBC show hosted by Melvyn Bragg and one of the guests was an anthropologist Professor Adam Kuper of the LSE (see: http://www.lse.ac.uk/anthropology/people/kuper.aspx) which reminded me of your post.
Social Darwinism is relevant to the treatment of tuberculosis because, in the early years of the 20th century, social Darwinists, eugenists and Neo-Malthusians strongly objected to the work of health workers and doctors amongst the urban poor. To their mind, this work was an experiment which would lead to “racial decay”, because those who would in previous generations would have died from illness and disease without reproducing, were being kept alive by health workers to produce inferior progeny. Currently I am studying the work of Karl Pearson FRS who attacked the work that tuberculosis pioneers, saying that the disease was primarily genetic and be solved by controlled by eugenics, and argued that their funding from the government be cancelled. Halliday Sutherland spoke out against eugenists and his speech “Consumption its cause and cure” was but one example of this. He was threatened with ruin in his views when he was sued for libel by Marie Stopes, a eugenist and neo-Malthusian, over her eugenic birth control clinic in London.
I will be summarising Pearson’s work on tuberculosis over the next month and publishing it on my site.
I think that the points you raised are valid. I believe that, Malthusianism has not gone away (for instance, Bill Gates and Al Gore’s speech at Davos at the beginning of 2014) and neither has eugenics (for instance, Richard Dawkins tweet concerning downs syndrome).
“Community” Health and Transnational Communities: Undocumented Andean Migrants and Tuberculosis Control in a New Immigrant Gateway,” in Immigration and Integration in Urban Communities: Renegotiating the City. Lisa M. Hanley, Blair A. Ruble and Allison M. Garland, eds. Pp. 197-235. Baltimore and London: The Johns Hopkins University Press/Woodrow Wilson Center Press.
Two resources for the history section:
Prof. Sir Richard J Evans on “The White Plague” in which he discusses the disease as “rooted in human society and behaviour” and not merely impacting society from the outside (see: http://www.gresham.ac.uk/lectures-and-events/the-white-plague).
A 1912 lecture by Karl Pearson F.R.S. “Tuberculosis, Heredity and Environment”. Pearson was the Galton Professor of Eugenics at the University of London. He outlines that eugenists, not doctors have the answer to tuberculosis because, as he points out: “the bulk of the tuberculous belong to stocks which we want ab initio to discourage. Everything which tends to check the multiplication of the unfit, to emphasize that the fertility of the physically and mentally healthy, will pro tanto aid Nature’s method of reducing the phthisical death-rate.” (see: http://www.biodiversitylibrary.org/bibliography/27546#/summary).
Just so happens my anthropological research on TB: TB a Global Pandemic was presented last year at the AAA world conference, I too would love to find more Anthropologists sharing their research to help in TB research and extinction!
Thank you for your comments Mark, Jason and Mimi! The links and articles you have suggested are particularly interesting!
There’s a Canadian film called “The Necessities of Life” about an Inuit man sent to a sanatorium in Quebec City.
Thanks for this fascinating offering. One observation: the 22 high burden countries reflects a questionable anti-TB strategy and may not be the best list to focus upon. These 22 countries (which are supposed to have 80% of the global burden) have the highest numerical burden, and not the highest incident burden. In other words many other countries with far higher TB incidence than some of the HBCs may be the best targets for investigation.
Thanks for pointing that out Merlin. You are right that using burden as a threshold for composing a list of countries most affected by TB pushes countries with a lower population but higher TB incidence off the list.
Thanks saravk for the film suggestion. I’m going to try and source a copy of “The Necessities of Life.” I just watched the French trailer on youtube — it looks like a touching film!
Paul, it’s worth adding that some of the high incidence countries have small populations, while some the high burden ones (China, India, Nigeria and Indonesia) have immense populations. This makes the the high incidence countries far easier to look at.. although they also have highly variable cultural differences so might be hazardous for drawing generalised conclusions. Also, of course, the highest also have the complication of a high incidence if HIV in the mix.
Going back to your initial question, however, you asked why aren’t there more researchers in the social sciences focusing on this problem? The answer to this probably lies at the heart of the problem – far too few people in any field seem able to wake to the fact that we have a pandemic of neglected disease on our hands (‘neglected’ being the operative word). It’s as shamefully simple as that. But we also have two clinically distinct emergent diseases as well mixed in as well (MDR- and XDR-TB) all wrapped up in the single banner of TB.. and these also have discrete socio-economic components to them as well.
nicely put, Merlin.
Thanks a ton for writing this amazing write-up. It makes so much sense to me now, being an anthropologist and working on Tuberculosis
Why cure tuberculosis when it could be used as a lethal chamber to rid society of the so-called unfit? This idea occupied the heart of the medical establishment in early C.20th Britain. The tubercle bacillus was described as a “friend of the race”, a necessary evil, because it put a “check…on the multiplication of idiots and the feeble-minded”. See: http://hallidaysutherland.com/2017/02/01/natures-lethal-chamber/