Genomics as public health? Community genetics and the challenge of personalised medicine in Cuba

Abstract

Making use of a comparative perspective on the emergence of ‘breast cancer genetics’ in the different cultural context of the UK and Cuba, this article examines the tensions between the modern promise of genomics as personalised medicine and a commitment to public health. Focusing primarily on the Cuba context and drawing on ethnographic research as part of a collaborative project working with genetic professionals and publics, the article examines the particular technologies, identities and socialities at stake in an emerging and evolving field of genetic medicine. It highlights how long-standing continuities in the commitment to the equitable provision of public health, particularly as this relates to ‘family medicine’, are central to understanding the scope and expansion of ‘community genetics’ interventions, even when at the level of local practice, public health is also now subject to the unequal dynamics of economic necessity through the working out of ‘lo informal’. Illuminating the different ways agency, risk, responsibility, citizenship and activism get configured by and between publics and health professionals in Cuba, the article reveals the challenges and opportunities posed by predictive genomic medicine in relation to the dynamic and shifting terrain of public health.

The advances in genetic technologies, which heralded the highly publicised discoveries associated with the first draft of the human genome in 2001 and included the rapid expansion of clinical genetics in Euro-American societies, were couched very much in terms of the promise of predictive health care, linked to the quest for ‘personalised medicine’.¹ Although this hope has not dissipated, the ‘hype’-filled discourse of genomic research and medicine has in recent years begun to be situated in much more contingent terms, with the complexity of gene/gene or ‘epigenetic’ and gene/environment interactions ever more apparent. It has also increasingly begun to be encompassed by and associated with broader health care applications. Efforts to align genomics with epidemiology and infectious diseases and to understand the significance of human biological variation for health and disease risk mean that the ‘dream’ of genomics as ‘personalised medicine’ now sits alongside and somewhat in tension with the goals of ‘public health’.

This article provides a window on to the shifting terrain constituted by the somewhat uneasy meeting point between the ‘modern’ promise of genomics as personalised medicine and the more long-standing goals of public health, by focusing on the way that knowledge and technologies associated with one very high profile arena of genomic medicine – ‘Breast Cancer Genetics’ – are emerging in Cuba. Cuba provides a unique vantage point for examining these developments; classified as a developing nation, with a well known political history that has made access to economic resources limited and uneven, it has nevertheless established a public health care programme where the goals of equity and universal access have long been championed. The discussion outlined here illuminates the context specific ways that technologies, subjectivities and more particularly socialities are being aligned in relation to genomic medicine in Cuba. As such it points to the importance of examining how continuities rather than rupture or novelty, characterise an emerging field of health care, as the tensions between genomics as personalised medicine and public health unfold in what is a changing and dynamic Cuban arena.

The first part briefly draws on previous research in genetic clinics and breast cancer activist organisations in the UK to illustrate the way that ‘Breast Cancer Genetics’ seems, in a Euro-American context to have been informed by certain modes of patient activism and identification. Turning to the Cuba arena, the article sets the emergence of what is described as ‘community genetics’ in the context of a long history of investment and attention to public health. Drawing from a collaborative project working with genetic health professionals carrying out interviews with 250 Cuban women the article examines how health beliefs and perceptions about breast cancer point to a particular kind of ‘biologised citizenship’ that foregrounds shared or collective health risk and responsibility. The way that different socialities inform the day to day practice of community genetics, linked to both the organisation and long-standing values of the public health system and the increasingly complex interdependencies between persons, associated with the procuring and exchanging of basic essential goods and services, are the focus of attention in the subsequent section of the article. Drawing on the narratives of Cuban genetic health professionals, the concluding discussion illustrates how the activism of these persons informs the socialities against which the opportunities and challenges of developing predictive ‘personal’ medicine as part of a public health care programme in Cuba must be understood.

BRCA genetics in the UK: anticipatory patients and activist cultures

The discovery of two inherited susceptibility genes in the mid and late 1990s, BRCA1 and BRCA2, linked to an increased risk of developing breast cancer, was, at the time, one of the most hyped and hope-filled aspects of the developments in genomic knowledge (Henderson and Kitzinger 1999) and was relatively rapidly translated into clinical services in Euro-American societies (Parthasarathy 2007 and Gibbon 2007). In the UK, genetic risk assessment for breast cancer became a primary concern of regional genetic services, characterised as struggling to deal with the ‘overwhelming’ number of referrals of women concerned about their risk of breast cancer (Wonderling et al. 2001). Risk assessment and predictive genetic testing for breast cancer have since emerged at the forefront of predictive genetic health interventions in the UK and elsewhere (Bourret 2005).²

Earlier ethnographic research working in cancer genetic clinics and with a breast cancer research charity suggested that the meeting point between novel genetic knowledge of breast cancer risk and a burgeoning culture of breast cancer activism has been central to understanding the expansion and rapid application of ‘BRCA genetics’, with consequences not only for the translation of this knowledge into clinical care but also for the character of patienthood. A form of ‘anticipatory patienthood’ was for instance evident in the way a number of these women talked about, presented and identified what they saw as their future embodied risk, linked to a desire for preventative predictive interventions. For these persons attending cancer genetic clinics was perceived as a means of being identified ‘at risk’ and legitimising rights and claims to the care and surveillance linked to specialist tertiary services such as cancer genetics (Gibbon 2007).

Research in the UK points in part to how a particular expression of gendered citizenship has been a prominent and productive feature of the growth and expansion of the novel field of knowledge characterised as ‘breast cancer genetics’. It has been suggested that breast cancer activism is rooted in mainly middle class rights based discourse (Klawiter 2004; King 2008). Studies in countries such as the US with little or no state provision of health care, have also highlighted how it is mainly women with access to health insurance who are more likely to be seekers of and recipients of expensive genetic services (Parthasarathy 2007). Whilst little is currently known about the way that health inequities and disparities configure the uptake of genetic services in Euro-American societies more generally, it would seem that the exercising of ‘rights’ and ‘choice’ around the ‘BRCA’ genes by activist publics is yet another illustration of how those with better access to resources are likely to be the subject of new health care interventions.³ Yet at the same time research suggests that a range of institutional cultures have also been important in the emergence of predictive medical interventions associated with breast cancer. That is, deeply rooted moral values linking the long ‘mandated’ relationship between publics and scientists in charitably funded cancer research in the UK, as well as the ‘symbolic’ contract between state and individuals in the regulation of national health care services, have been equally central to the work of translating expert and promissory knowledge around the BRCA genes into clinical care (Gibbon 2008; see also King 2008).

While the influence of institutional cultures have been somewhat neglected in recent analysis of the ‘biosocialities’ associated with new genetic knowledge in Euro-American societies, it is much more difficult to ignore the relationship between state and publics in Cuba. The challenge for those seeking ethnographic understanding in this context is to examine how daily lives and experiences are negotiated and co-exist with institutional state practices and rhetoric. The emerging field of ‘community genetics’ in Cuba and the fledgling steps towards incorporating predictive interventions linked to an increased risk of breast cancer, provides a unique opportunity to examine the way that citizenship and subjectivity are caught up within a changing field of genomic medicine in what seems a comparatively different terrain of political engagement, activism and identification.

‘Revolutionary health care’: public health, family doctors and community genetics

The ‘paradox’ of a country such as Cuba with a GDP that locates it as a ‘developing country’, but with health indicators such as infant mortality and life expectancy that are comparable to Euro-American countries, has long fascinated social analysts and political commentators. The development of a comprehensive health care programme, committed to universal and equitable access, which evolved from long-standing efforts to create an integrated approach to health care promised by the revolution in 1959 has long stood as an important symbol of the success of the socialist project (Feinsilver 1993; Eckstein 1994; Brotherton 2005).

Following the creation of locally based ‘polyclinics’ in the 1960s and 1970s across urban and rural areas, which replaced and supplemented weak or non-existent health services in remote, poor and under-served parts of the country, particularly in the eastern regions, the socialist government turned to the training of thousands of Cuban health professionals. The success of this endeavour is well publicised; in 2001 the Ministry of Public Health (MINSAP) documented that there were 31,000 doctors with a ratio of one doctor for every 120 families. A focus on ‘family medicine’ became institutionalised as part of the Family Physician and Nurse Programme (MEF) set up in the 1980s with doctors living and working in the communities as part of a network of consultorios. Consolidated over the whole country, integrating with hospitals and local polyclinic services, and enabling Cuba, according to Spiegel and Yassi, to apply the principle of ‘health for all with a primary focus’ more thoroughly than anywhere else (2004, 97), it has been particularly influential in changing the dynamic between practitioners and publics (Nayeri 1995; Brotherton 2005).⁴ Such a vast increase in medical professionals, alongside a targeted approach to family medicine and particularly infant and maternal health, has also been directly attributed to notable Cuban successes in reducing infant mortality and increasing life expectancy to levels that compare well with and in many cases are better than other ‘Western’ countries, against the seemingly impossible economic odds posed by the US embargo and the collapse of Soviet subsidies in the 1990s.

Cuban ‘Community Genetics’ or ‘Genetica Communitaria’ as it is called, has expanded in the last six years to provide a comprehensive programme of health intervention and prevention that emerges at the meeting point between a long-standing, nearly 40-year public health programme of infant and maternal health and the system of family medicine set up in the 1980s. This is reflected in the infrastructure for this new health focus, linked as it is to the system of primary care set up through the MEF programme, with regional and inter-regional genetic networks and centres and clinics. In one of the eastern provinces where research was carried out there were 14 separate genetic clinics. These are often centres in their own designated building located in residential areas but with separate consulting rooms and frequently their own laboratory or screening equipment such as ultrasound technology. The walls and entranceways of these centres are, like other public health and state institutions, filled with hand-made murals where images of Fidel, Che and Chavez vie for attention with health care information, such as advice about breastfeeding. Some centres are located alongside or even inside a polyclinic, but they always have their own cadre of dedicated specialist technicians, genetic specialists and nurses who form the community genetics team. Over the last six years thousands of health professionals, many who have previously worked as family doctors in consultorios, have re-trained to become specialists in genetics, taking masters courses in Havana, before returning to their communities to become part of an expanding programme of community genetics. The extent to which this new specialism is being integrated and made synonymous with socialist values was evident in the attention given by state television and news programmes to the activities of these professionals. During the period of time in which research for this project was undertaken both an annual national and a regional meeting of community genetic professionals in the far east of the country became the focus of the nightly political discussion programme Mesa Redonda and were reported on the national news for many weeks afterwards.

Given the history of public health interventions and the context for the emergence of community genetics it is not surprising to find that the main day-to-day focus of the professionals working in this field is mostly newborn screening using the ‘tamisaje’ or blood-spot test to monitor for relatively rare chromosomal conditions such as Phenylketonuria. They also participate in the facilitation of national screening programmes for conditions such as sickle cell, with some prenatal testing available in regional centres and in Havana. By comparison the work of genetic teams in relation to complex adult onset conditions such as breast cancer is, as yet, fairly minimal. Due to cost and lack of technological infrastructure during the time of the research for this paper there were no established programmes of clinical predictive testing for breast cancer. Nevertheless many regional and local clinics are involved in collecting and collating registries of families affected by conditions such as breast, prostate and colon cancer as well as a range of other conditions.⁵ These initiatives provided the context for the collaborative project from which the data for this article is drawn, working alongside genetic professionals in three different provinces in the east, centre and west of the country in regions outside of Havana.⁶ While interviews were undertaken with Cuban women, regarding their health beliefs about the ‘causes’ of breast cancer, family history was collected by the clinical geneticists and nurse practitioners working in the regional community genetics clinic.⁷

Biologised citizens and non-individuated risk

The process of collecting details about the history of cancer and other diseases in the family during interviews undertaken with Cuban women revealed an impressive grasp of the medical information and details. Often it was quite possible for persons to not only remember the dates a relative had died or been diagnosed but sometimes also the specific details of the medical procedure they or a relative had undergone. For example, the history surrounding the way they or a relative had been ‘hospitalised’ was often vividly conveyed. Persons were often able to remember sometimes the names or colour of drugs, as well as the frequency with which treatments had been given or the intricate details by which they or a relative had been taken to one of the larger urban hospitals. On a few notable occasions these discussions culminated and/or sometimes began with persons retrieving almost crumbling yet nevertheless carefully stored and preserved medical notes or an X-ray in order to re-read and share the details of medical procedures.⁸ It was notable that this impressive ability to be conversant in and recount the details of medical scenarios, often constituted a response to queries about the experience of breast cancer.

Discussions relating to questions concerning health beliefs and opinions about the ‘causes’ of breast cancer, nevertheless situated this ‘active’ engagement with medicalised discourse in a very particular way. That is at the same time that descriptions of medical procedures were offered in response to queries about the experience of breast cancer, there was what might be described as a ‘non-individuated’ perception of disease risk.

It was notable that sometimes open-ended questions about health beliefs elicted bemusement, silence and simply a shrug that conveyed a sense that the answer (and to a certain extent the question being asked) was unknowable, unimportant or irrelevant. Further prompts about possible risk factors could also elicit non-committal responses such as ‘puede decir esta’ – ‘you could say that’ – rather than definitive agreements or disagreements. Such responses in part directly reflect a situation where for the majority of Cubans anxiety about possible health risks simply does not constitute a horizon of activity and concern, occupied as many persons are in the daily struggle to acquire basic goods and necessities. In one sense this illustrates (as other articles in this issue suggest) how engagement with novel health information and intervention may be hierarchically ordered depending on socio-economic factors governing access to resources, money or time.

Nevertheless further questions relating more specifically to so-called ‘lifestyle factors’, revealed how collective ideas and common responsibility for health constituted a particular landscape of risk for many interviewees. For instance although diet or exercise was acknowledged by some as important to overall health, these were not always seen as factors which individuals could change or control and by logical extension could not therefore explain why some people might or might not get breast cancer.⁹ Similarly the notion of ‘stress’ was a difficult to locate concept for many; ‘estamos viviendo en las mismas condiciones’ (‘everyone is living under the same conditions’) was a frequent refrain that accompanied responses to queries about the role of lifestyle risk factors. Genetic risk factors, more usually couched in terms of the role of ‘la herencia’, occupied a similarly anomalous position. Very few persons had actually heard of the ‘BRCA’ genes and although many were very attentive to and could recount their medical family history, ‘genetic risk’, normally conveyed in terms of ‘the inheritance’ (‘la herencia’) was certainly not the only or most important risk factor in considering the causes of breast cancer, and was often given minimal or cursory prominence in discussions.¹⁰

In contrast to comparable interviews undertaken with a UK population, the most salient perceived dangers, rather than being generated from within the body or linked to the actions of the person themselves or related to so-called ‘lifestyle’ or even genetic risk factors, were often linked to factors that were perceived as impacting upon the individual person or body from the outside. One illustration of this was the frequency with which respondents explained the cause of breast cancer in terms of a ‘blow’ or a ‘golpe’. Although such descriptions were sometimes used interchangeably to talk about the cause and the psychological trauma of having breast cancer the explanatory use of ‘golpe’, set against the broad background of beliefs about non-individuated causes of breast cancer, references a broader set of concerns and priorities regarding health risks.¹¹ That is many persons perceived the most important risk factors for the disease to be those that impacted on the person, body or self. One powerful illustration of this was the prominence given to factors seen as entirely outside of the control of the individual. This included the effect of wars (‘guerras’) and environmental pollutants (‘factores ambientales’) or ozone depletion – all of which were generally perceived as coming from outside Cuba. Although this could be accompanied by discussion about the need to strengthen bodily defences against outside threats this was not often expressed through morally inflected notions of individual responsibility but somewhat impersonally with reference about the need to defend and protect ‘el organismo’.

Given the effects of the ongoing trade embargo by the US and the ‘periodo especial’ or the Special Period that precipitated a time of severe economic shortages following the collapse of the Soviet subsidies in the 1990s, it is perhaps not surprising to see in these representations a sense of the ‘body under siege’ from factors that are outside the control of individuals. As a number of social analyses have noted the daily struggle or ‘lucha’ for basic food and living needs informs the way individuals relate to health, risk and embodiment. Brotherton in fact argues that this economic situation has nurtured a new kind of market individualism, particularly in the search for drugs and other scarce health care resources (2005, 2008). The interview data presented here, examining health beliefs and practices of populations outside the more ‘westernised’ context of Havana, suggest that political ideologies continue to inform perceptions of disease causation or bodily risk as well as notions about collective responsibility for health.

Rose and Novas suggest that in euro-american societies ‘activism and responsibility’ are now ‘virtually obligatory’ in constituting the ‘biological citizens’ required and produced by genetic knowledge (2005, 451). The Cuba data outlined here suggests that the relationship between biology and citizenship might be configured less as biological citizenship and more as a form of biologised citizenship with particular consequences for the integration of predictive health interventions and public health. That is, while medical discourse and, to a certain extent, health surveillance form a backdrop to daily life in Cuba, this seems to be framed less as an individuated rights-based discourse and more in terms of perceptions of risk and danger that reflect common, shared and collective accountability for health and illness. The data presented stands in contrast therefore to the moral idioms of individual vigilance or awareness which characterised the narratives of women in the UK attending cancer genetic clinics eager to actively pre-empt future embodied risk. At the same time the somewhat more distributed and (dis)embodied reading of health risks suggests a less than easy transition to predictive and personalised medicine in the Cuba context.

Living and working in community genetics: family medicine, biopower and the ‘economy of favours’¹³

Working with different teams of medical geneticists in the three different provinces where the research for the project was undertaken it was clear that genetic professionals were very much at the centre of their communities. For many their current role had evolved from being family doctors living in or near the district where they worked. In both roles they found themselves unable to walk down the street without meeting or being greeted by neighbours, friends and patients who knew them. They jokingly told of how their private homes were sometimes like ‘consultorios’ with neighbours, friends and acquaintances casually calling in the evening or stopping them on the street to ask advice about health problems, genetic or otherwise. While their location at the centre of these networks of sociality provided easy access to advice and health care services for the populations they lived and worked with, it also enabled and helped facilitate a vital aspect of community genetic interventions: collating family history and undertaking the delicate task of negotiating family dynamics in the context of genomic interventions.

Sitting alongside genetic practitioners in family homes exploring health beliefs about cancer it was evident that although the social context of these narratives and practices was of interest, of most concern was the collection of family history data. Their palpable excitement in identifying the presence of a potentially ‘significant’ piece of information was accompanied by a steadfast dedication in collecting family history, with careful attention to ensuring details were correct, firing further questions or drawing up mini clinical family trees. These activities were all similar in intention at least to those witnessed in the cancer genetic clinics in the UK. What was striking about these interchanges was the absolutely routine way such histories were collected. There was a calm, sometimes resigned, but nearly always willing response on patients’ part to queries about the past or current health of related family members, which could on occasions recruit not only multiple family members but friends and neighbours into open-ended freewheeling discussions about medical histories and family experiences. This was very different to the sometimes difficult scenarios that arose around sharing and requesting information about family history in the cancer genetic clinics in the UK. In Cuba it is difficult not to share health information with family members in part because of complex and often difficult living arrangements that mean multiple generations share the same or nearby living quarters as well as economic interdependence. Yet the dynamics between patients and genetic practitioners surrounding the collection of family history also reflect the embeddedness of an institutional culture of community medicine.

A situation that enables health practitioners, genetic or otherwise, to have easy access to family history and intervene in the health and well-being of related persons is from one perspective synonymous with the practice of ‘biopower’ or state surveillance and monitoring of the populations. At some of the weekly meetings of the regional genetics teams there was plenty of emphasis on the importance of collecting ‘edstatistica’ or statistical data regarding patients and sending this information back to government and state public health institutes in Havana. But such one-dimensional readings do not account for or explain the way that Cuban health care interventions are practiced within communities as part of daily existence and negotiated alongside the dynamic economic realities of life in Cuba.

In his ethnographic examination of the transformations in the public health care system since the collapse of the Soviet subsidies in the 1980s and the tightening of the US trade embargo, Sean Brotherton points out how at the same time that the system of family doctors set up in the 1980s have made medical professionals important monitors (and promoters) of the health of the population it has also meant that they are caught up in the necessary local economies of exchange or what are described as social networks or ‘socios’ by which consumer goods and other ‘essential’ services are obtained (2005, 2008). His work demonstrates how, in circuitous ways, such informal economy practices, while challenging the values of state socialist health care, have also indirectly helped to maintain its infrastructure. The next section examines how this form of sociality, what Jenkins calls an ‘economy of favours’ (2008), and which as a form of ‘clientship’ echoes a much older system of patronage in Cuba that pre-dates the socialist state, now informs the work of community genetics.

Working closely with genetic professionals and witnessing the exchanges between them and different publics in a variety of rural and urban community settings, it was evident that they were implicated in the lives of their communities in numerous ways. Many doctors, including geneticists, received small gifts of food for instance or consumer goods in return for helping a patient, providing extra resources for health professionals on low state salaries. In addition some genetic professionals and their families also earned extra income from activities that might be considered part of an informal economy with one doctor keeping pigs in her back yard to sell, while another’s mother made dolls for tourists. But perhaps one of the most immediate indications of the way that both genomic interventions and community genetic practitioners were implicated in these networks of exchange was the way offers to help with any kind of ‘genetic problem’ if it ever arose (‘si usted tendria una problema genetica’) was dropped into conversations or even chance meetings between health professionals and both known and unknown publics. Such offers seemed almost casual, reflecting the easy way in which medical interventions, even of a quite specialist sort and not simply medications, could become part of economic and social exchange practices. The fact that these offers were made in the light of encounters where the potential recipients of genetic expertise had often gone out of their way to assist the health professionals concerned, suggested that belying such casual remarks were genuine offers that could and would be redeemed at a later date.

One event as recorded in field notes, illustrates how such exchanges helped to constitute the bonds between publics and health professionals, including those who worked in the arena of community genetics:

Arriving at one of only three licensed family homes available for foreigners in a small town in an eastern province at the start of a period of interviewing, accompanied by one of the genetic professionals who would be working alongside me, we knocked and waited but there was no answer at the door. Voices could be heard from the roof top accompanied by the smell of roast pork wafting through the air. After spotting us outside the owner comes down, beer in hand to explain that they are having a party and we should join them. On the roof we are introduced to an array of family members and others who, it turns out, work with the doctor I am with alongside the genetic team at the hospital. There is also an elaborate crib with a newborn baby placed to the side of the gathering. The host explains that he has put on the party for everyone who helped in the birth of his son. Between an unending supply of beers and plates of roast meat and rice that keep appearing, and midst voluble music and discussion, the story emerges from the host’s mother that her son and daughter-in-law were both carriers for the recessively inherited sickle cell disease and the genetic and ante-natal team had as result been closely monitoring the baby. She talks effusively about the genetics professionals, the care they have taken in monitoring her new grandson. She asks me if I’ve seen their (the community geneticists’) recently built centre on the hill overlooking the town, right next to the maternity hospital – ‘es linda’ (it’s beautiful), she says.

This and other examples give a somewhat different meaning to the easy and normative exchanges of health information, such as that surrounding family history. They suggest that the dynamics between genetic professionals and publics in Cuba cannot just be read simply through the lens of ‘biopower’. Instead they are powerfully informed by interdependent socialities that circuitously link health professionals, publics, public health interventions and increasingly also informal economy practices.

The final part of this article examines the practices and narratives of genetic health professionals and the way these individuals situate their work in relation to the values and ethics of public health; reflections which reveal some of the tensions generated by the prospect of developing predictive or so called personalised medicine in Cuba.

The ‘humanism’ of community genetics: the challenge of predictive and personalised medicine

Cuban doctors have been portrayed as ‘heroic’ figures of the Cuban revolution (Feinsilver 1993); they are as such embodiments of the symbolic capital that the Cuban system of public health garners in national and international contexts.¹⁴ Many of the professionals encountered during the course of fieldwork, whilst fully aware of the contradictions of daily existence, often themselves lacking basic necessary resources, seemed nonetheless resolutely committed to their work. One illustration of how identifying as a genetic practitioner is caught up with national identity, history and revolutionary ideals emerged during a telling fieldwork exchange:

Driving around in a ‘coche’ or horse drawn cart in a medium sized town in the Eastern part of the country the geneticist I’m with, while laughing about the fact that the town is so antiquated with its only ‘rural’ form of transport, also points out with pride all the long running clinics that are linked to the newly established community genetics initiative. Here she points out is the Diabetes Day Care centre and here the Retinitis Pigmentosa clinic. Later as part of the ‘tour of the town’ she and a colleague take me to one of the landmark historical sites in the area, the place ‘where the revolution began’ as a nearby government billboard proudly proclaims. It is the place where, as told in local and national history, the resistance to Spanish rule and also the revolt against slavery began in the 18th century. It is a history told in detail and with enthusiasm by the doctor and her colleague who are guiding me around the public spaces where this event is commemorated. It is whilst walking around this historical site that commemorates the exact place where a much earlier Cuban revolution began, the geneticist I’m working with chooses to tell me about the programme of sickle cell screening in the region. Stating that this is a region where the number of recessive carriers is high, she points out that this is what makes sickle cell screening such an important aspect of the work that she and others in the community genetics team are now engaged in as part of a programme of public health.

The comments of the geneticist, deliberately juxtaposing her pride-filled reflections on the practice of community genetics with an equally pride-filled reflection on a formative part of Cuban history, appears to situate both as expressions of national ‘revolutionary’ values and ideals. Such a juxtaposition has in fact a double meaning in the region and the province in question; the later 1959 revolution brought social welfare, including health benefits, to the majority of the rural population in a way that had never existed before, including now providing an infrastructure for the practice of community genetics. In fact the well known ‘sacrifice’ made by a leading local figure of the eighteenth century revolt against slavery is given present day continuity in the way the entire region is represented by those who live there, geneticists and others, as a place where (often in contrast to Havana) ‘loyalty’ to the socialist values is still strong, sustained by the ongoing collective commitment and sacrifices of its population.¹²

More generally the image of the selfless doctor who earns little but reaches out to the poorest, weakest and most vulnerable in society is a common popular narrative promoted in the state media and embraced by medical professionals themselves. The ‘humanism’ of genomic medicine was in fact something that was emphasised at many opportunities. It was particularly evident in relation to the work undertaken by genetic professionals working with those living with physical and learning disabilities –‘los discapacitados’. These high-profile community interventions serve as a showcase for the work of community genetics, as illustrated by the numerous occasions during the course of fieldwork when a visit to a local school for the disabled on ‘Josi Marti Day’ or a dance performance by a group of children with Down Syndrome during a national conference of community genetics served as the emotional highlight of public events in which genetic professionals easily and willingly demonstrated their involvement. One doctor, after watching admiringly one such performance, was emphatic; with tears in her eyes she announced that ‘por esso soy una doctora’ (‘for this reason I’m a doctor’).

The work of health professionals within the aegis of the community genetics teams is, as these and other examples discussed in this article suggest, very much tied to the values of revolutionary health care as it connects a nearly 40-year programme of maternal and infant health, focused mainly on antenatal screening, with the system of family medicine set up in the 1980s. Yet while the compiling of family history data on those families affected by late onset complex disorders such as breast cancer is being undertaken, so called ‘predictive interventions’ both in terms of genetic testing for breast cancer and in fact even routine mammography screening for those identified at increased risk do not and currently cannot (for economic reasons) form part of the repertoire of practices undertaken by these professionals. There was in fact a good deal of open discussion among these professionals about the problematic nature of predictive medicine. This was not least because there are, as recognised by medical persons and publics in the UK context also, very few truly ‘preventative’ actions available to those individuals identified at risk, which may in addition have negative consequences for the patient concerned and or related others. Yet the prospect of developing predictive genetics around diseases such as breast cancer are problematic for Cuban genetic professionals for other reasons, which relate directly to the symbolic meaning and value of collective public health in the Cuban context.

Two ethnographic examples, recounting the response of genetic professionals to related yet different scenarios where difficult ethical requirements of so-called personalised predictive medicine arose, serve to illustrate some of these challenges.

Excerpt One

It was not uncommon to arrive at a family home only to be met by the daughter or relative of the person we had come to interview who told us at the entranceway in hushed tones that we really shouldn’t mention the word ‘cancer’ as the prospective interviewee hadn’t been told at the time of their diagnosis or subsequently that they had or had had cancer. It was an understandably difficult situation for all concerned, inducing discomfort and consternation, which most often led to a decision to not undertake the interview. Such scenarios prompted conversations with the health professionals and doctors, anxious to know my opinion about what they saw as an ‘ethical’ dilemma. Many acknowledged that it was a situation that arose in part because of the paternalism of the practice of medicine in Cuba, couched nevertheless in terms of the state being very ‘protégé ’ or protective. At the same time such acknowledgements sat alongside a desire to emphasise that it is in fact ‘genetica communitaria’ which is leading the way in best ethical practice in relation to individual decision-making around health.

Excerpt Two

Following the weekly philosophy class for the whole genetics team that I have been invited to sit in on at the end of a long and hard working ten days of interviewing in a central province of the country, I head down the hill from the Genetics centre with the team of doctors to have lunch. The contradictions of Cuban life are more evident here perhaps than elsewhere. A daily reminder of this is provided by the fumes that clog the streets from the constant stream of traffic and bus loads of tourists who traverse their way between Havana and a nearby tourist region, a resort that many Cubans including geneticists are prohibited from visiting. Blocking out this inequitable reality is also part of daily life and conversation is focused on the work we have been doing this past week interviewing women about their health beliefs around breast cancer. Nevertheless the themes of the morning philosophy class, centred on how the humanism of socialist public health care ameliorates the potential alienating effects of technology, converges with reflections about the work we have been undertaking. ‘You see’, says Claudia, very pointedly directing her comments to me ‘here we are focused not just on the health of one individual woman with breast cancer but the whole community – Science in Cuba is for everybody’. She goes on to talk effusively about the programme of health intervention she is going to try and instigate, following our interviews in more rural parts of the province. There is no mention about the need to develop or provide predictive care for those few individuals identified as being at risk – her future vision is simply couched in terms of an effort by genetic professionals to raise awareness of the disease.

The responses of these health professionals reveal not only their ongoing commitment to a system of medical provision that is focused on the health of the wider community, but also a strong awareness of the problems of integrating Cuban public health with so called personalised genomic medicine. In the first instance the complex challenges generated by the ethical demands of individualised informed consent and confidentiality, so central to the hype and hope-filled rhetoric of predictive medicine, come up against the paternalistic practices of the state and a culture of silence around feared and dreaded diseases such as cancer. In the second excerpt it seems the need to locate genetic health care practices related to breast cancer within a framework that ‘fits’ the humanistic public health paradigm of community genetics is better achieved through collective health awareness rather than attending to individual demands and needs related to personalised genetic medicine

Conclusion

Recent attempts to factor in the way political economy and health inequalities inform subjectivities and identities across and between national arenas have provided us with novel theoretical conceptualisations. Vinh-Kim Nguyen’s notion of ‘therapeutic citizenship’ (2005) and Sunder Rajan’s reading of ‘experimental subjectivities’ (2006) are two recent examples. Respectively these concepts illustrate the way that humanitarian interventions in the provision of ARVs can provide the context for a mobile form of transnationally constituted ‘citizenship’ and the consequences of recruiting former textile industry workers in India into US-funded clinical trials using the ethical machinery of informed consent. The Cuba data presented here provides insight into a different configuration of citizenship and technologies of biomedicine. Far from there being de-coupling of citizenship and sovereignty or a dissolution of state health provision, it is in fact precisely through the interconnectedness of citizenship, nation and the ethical machinery of pastoral public health care that genomic interventions are being mobilised. This points to the importance of examining how continuities rather than rupture or novelty characterise genetic health care in Cuba, even as the tensions between personalised medicine and public health unfold in what is a dynamic and changing context.

In contrast to research undertaken in the UK, the Cuban material highlights the way long-standing social practices relating to the organisation of health care, rather than new forms of subjectivity, are central to the mobilisation of genomic medicine. This has been explored first in relation to the narratives of individual Cuban women. Here what are mostly collective, common and shared perceptions of risk and responsibility concerning health beliefs about the causes of breast cancer, point to the saliency of a socially situated self which might be better conceptualised in terms of ‘biologised citizenship’. As a result engagement with health care practices and interventions does not necessarily result from or inform a culture of patient activism focused on individualised health care rights and responsibilities, as it appears to have done in the UK. Rather, like recent studies in China and Vietnam (see for instance Gammeltoft 2008) the material presented suggests that countries where ideologies and practices of state socialism have endured may be constituted by quite different concepts of personhood as this relates to embodied health practices, sociality and perceptions of risk or disease aetiology.

Fledgling moves to incorporate predictive medicine in Cuba must however also be understood in relation to the organisation, values and goals of a broader practice of ‘community genetics’, which is closely linked to a long-running programme of infant and maternal health and a system of ‘family medicine’ that has been in place for over 20 years. The data presented here suggests that in contrast to Sunder Rajan’s examination of the development of pharmacogenetics across the transnational arenas of India and the US (2006), the symbolic capital for Cuban genetic interventions is directly linked to the ‘trope’ of public health and hope-filled discourse and values associated with socialist state effort to provide this. Yet the dynamics around which genetic medicine and public health are being mobilised in Cuba are not static. Making use of Brotherton’s studies (2005, 2008) the article has illustrated how the work of community genetics, is constituted as much by informal networks of exchange and patronage as it is by long-standing institutional cultures and rhetorical discourse about ‘revolutionary’ health care. The final section of this article, reflecting on the narratives and practices of those who work in the field of community genetics, reveals the extent to which health professionals identify with state socialist values of ‘equity’ and ‘humanism’ in their daily ‘lived’ work. It is in fact the activism of these health professionals which throws into relief the ethical and ideological challenges posed to the Cuban model of public health by the movement towards predictive and personalised medicine.

With its long history of commitment to public health, which has also become a symbol of national identity and pride, Cuba presents a unique context for examining the juncture between novel technologies, subjectivities and inequities that are the subject of this special issue. Despite the ongoing contradictions rendered visible and real in the daily economic inequities that are necessitated by ‘lo informal’ in Cuba, it continues to stand somewhat in contrast to the process of ‘pharmaceuticalizing public health’ that Joao Biehl explores in Brazil, where policies aimed at reducing differential access to health care products (in his case ARVs) resulted in unexpected concretization of health inequities (2007). What seems to be at stake in Cuba is the difficult social and cultural ‘fit’ between a model of community genomic intervention linked to the values of universality, equity and ‘humanism’ as sources of social capital for the state and for some of its activist citizens (represented here by genetic health professionals) and the problematic project of personalised medicine, with its emphasis on individualised health care and differential intervention. The specificity of this juncture points to the ongoing need for careful ethnographic attention to the particular ways that novel health technologies, such as genomics, are translated across diverse cultural arenas, as the modern promise of personalised medicine is negotiated within the dynamic and shifting spaces of public health.