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Abstract
This contribution draws on ethnographic research conducted in Oman on inherited blood disorders (IBD). By interpreting results from population genomics studies that trace mutation processes over centuries of human activities, lay-representations of IBD often consider them historical evidence. The perceived spread of IBD in Oman may thus provide unusual historical depth in a country where past conflicts have been erased from historiography and representations of time are politically prescribed. Through the notions of crisis and diversification, this contribution shows how IBD's chronicity challenges the healthcare system and became a national issue, politically labelled as urgent. The paper casts light on several aspects of contemporary Omani society: it first addresses the dynamics of disease taxonomies – although biomedically described in the early twentieth century, IBD were not individualized within local nosologies until the 1970s. Secondly, it shows how biomedical knowledge about IBD led to diversification within the healthcare system, through the introduction of clinical genetics, genomics, and community genetics. Thirdly, it attempts to broach modalities of the biopower exerted by the Omani regime over its citizens: IBD are targeted by various public health measures that jeopardize patients’ autonomy by aiming to control their bodies through their matrimonial behaviour. In addition, two aspects of the intersections between Omani social hierarchy and IBD are noteworthy: the creation of a patients’ association that constitutes a potential disturbance of the social order; and the way IBD mutations traced by genomics are considered direct historical documents that challenge representations of the recently crafted ‘Omanity’ in a context of regional concern regarding national identities’ durability.
Acknowledgements
This research was funded by the French Ministry of Higher Education and Research, the French Society for Perinatal Medicine (SFMP), the French Centre for Archaeology and Social Sciences of Sana’a (CEFAS, Yemen) and the French Embassy in Oman. Fieldwork has been supported by the College of Arts and Social Sciences, Sultan Qaboos University, Muscat, Oman. Ethical approval was obtained from the Research and Ethical Committee of the Omani Ministry of Health. The author would like to express her gratitude to patients, families and health practitioners in Oman, for their trust and the way they let her settle into their everyday lives, in hospitals or at home, in Muscat and elsewhere. She would also like to thank the editors of this special issue, the three anonymous reviewers, as well as Anne Marie Moulin, Jean-Paul Gaudillière, Sylvie Fainzang, Mary-Ashley Ouvrier, Susann Huschke, Dominik Mattes and the members of the Cermes3 doctoral seminar for their highly valuable comments on earlier versions of this text.
Conflict of interest: none.
Notes
1. For more details about history and politics of the Sultanate, see for instance Valeri (Citation2009).
2. The death of young affected people most of the time originates from a late (or absence of) diagnosis. This can take place in countries where newborn screening is not implemented and, for sickle-cell anaemia specifically, if the first pain crises are not diagnosed as sickle-cell related. Sickle-cell anaemia and thalassaemia are different diseases that produce different life experiences; however, the choice of considering them as a whole is grounded in what they share in Oman, namely some of their symptoms, part of their biomedical management and most of their related social issues.
3. For more details regarding the physiopathology of sickle-cell anaemia and thalassaemia, see for instance Anionwu and Atkin (Citation2001).
4. Figures vary from 3000 to 8000 (i.e. 13 to 33 of 10,000 inhabitants) depending on the study. Eight thousand appears a plausible number on the basis of the author's observations.
5. For an in-depth discussion of the entanglements of racial/ethnic categories, genetics and population genomics on the basis of the sickle-cell example, see Carter and Dyson (Citation2011).
6. Given the Omani political context, anonymity often was the necessary condition of non-self-censured discourses.
7. He alludes to the civil war taking place at this time in the Southern part of Oman (Dhofar): Omani opponents allied with China and South Yemen were fighting the sultan's army, with the aim of implementing a ‘popular democratic republic’ in the Arabian Peninsula.
8. For example: measles immunization coverage in Oman is 97% and 100% of expecting mothers have accessed a prenatal care facility once (World Health Organization 2009).
9. Oil extraction represents about 80% of Oman's GDP. The current ‘proven oil reserve’ of Oman is approximately 5500 billion barrels (Radler, Citation2008), allowing only 17 more years of exploitation at the daily extracted quantity reached in 2011.
10. Which is more severe for thalassaemia in resource-poor settings, while situations are more various for sickle-cell anaemia: it is possible to survive the disease (for an example in contemporary Senegal, see Fullwiley 2011) without biomedical treatment.
11. As opposed to ‘professional’, and more specifically to ‘biomedical professional’.
12. This echoes the African nosology described by Konotey-Ahulu (Konotey-Ahulu 1991, cited in Carter and Dyson Citation2011), where sickle-cell-induced joint pain crises where labelled as ‘rainy season rheumatism’.
13. ‘Community genetics’ is a medical field created in the late 1970s that combines public health and clinical genetics. It aims at implementing screening programs, genetic counselling and information for people affected by hereditary diseases.
14. These kinds of programs usually aim at decreasing the number of affected children by detecting (with haemoglobin electrophoresis) individuals carrying mutated genes and offering genetic counselling regarding the transmission risk in case two carriers consider getting married. Such programs have been implemented in Iran, Saudi Arabia, United Arab Emirates and Cyprus (Angastiniotis, Kyriakidou, and Hadjiminas 1986; El-Hazmi 2006; Najmabadi, et al. Citation2006).
15. In the Foucaldian sense of exercising power over bodies and, more specifically, of a State exercising this power over an entire population's bodies.
16. Except for a minor administrative fee, which must be paid for every visit (about €0.5).
17. Except for expatriates who were granted Omani citizenship as a reward (for example: 37 individuals in 2007 according to the Ministry of National Economy 2009, 461), and residents living in Oman for decades.
18. Given that marriage is the social frame of the immense majority of births in Omani society.
19. See El-Hazmi (Citation2006); Najmabadi et al. (Citation2006).
20. That is, (apart from Oman) Kuwait, Bahrain, Saudi Arabia, Qatar and the United Arab Emirates.
21. In the ‘test institutions’ where the policy is implemented.
22. It also recalls the highly criticized suggestion of Linus Pauling (Pauling 1969), the American biochemist who discovered the biomolecular mechanism of sickle-cell anaemia: he called for carriers of sickle-cell anaemia to be tattooed with their genetic status on the forehead, so that they could ‘avoid falling in love’ with each other.
23. Fundamental Law, article 33.
24. See Note 8.
25. Oman Hereditary Blood Disorders Association, http://www.omancares.org. Two other patients’ associations already existed: the Oman Diabetes Society and the National Association for Cancer Awareness.
26. Article 12 [Social Principles].
27. Available figures are differing but one can roughly consider that the incidence of sickle-cell anaemia and thalassaemia in Oman is about 20 to 100 new cases per year.
28. In the Omani context, citizens paradoxically seem to request an increase of state control on body and health. This is partly diverging from other studies addressing biological citizenship together with autonomy, but this paper argues that some aspects of the concept have to be defined differently within authoritarian political contexts.
29. The term ‘Omanity’ (Valeri 2007, 2009) has been chosen on purpose, instead of ‘Omaniness’ (Chatty 2009): the suffix –ity indeed expresses a more abstract (less embodied) condition than –ness. This appeared more suitable to name a social and political construction. For more details regarding this construction of an Omani national identity, its political stakes and the general political background, see Valeri (Citation2009).
30. For details about the 2011 and 2012 events in Oman, see Valeri (Citation2011) and Worrall (Citation2012).
31. Reported to be 37 in the last 8 months as of October 2012 (Gulf Daily News 2012a).