Abstract
Historically, cultural accounts and descriptions of blood banking in Britain have been associated with notions of altruism, national solidarity and imagined community. While these ideals have continued to be influential, the business of procuring and supplying blood has become increasingly complex. Drawing on interview data with donors in one blood centre in England, this article reports that these donors tend not to acknowledge the complex dynamics of production and exchange in modern blood systems. This, it is argued, is congruent with nostalgic narratives in both popular and official accounts of blood services, which tend to bracket these important changes. A shift to a more open institutional narrative about modern blood services is advocated, as blood services face current and future challenges.
Keywords: sociology, donors, blood systems, narratives
Introduction
Blood donation has long been viewed as a dramatic symbol of interdependence. In Europe, the emergence of formal blood banking systems in the post-war era was inextricably associated with notions of altruism and solidarity. The association of blood banks with altruism, solidarity and imagined national communities continued well beyond the post-war years (Rabinow, 1999). When Richard Titmuss (1997: 311) wrote his famous analysis of blood donation as a ‘gift relationship’, based in part on empirical research undertaken in Britain in the late 1960s, he could still write in universalist terms that blood services represented ‘one practical and concrete demonstration of fellowship relationships institutionally based in Britain in the National Health Service and the National Blood Transfusion Service’. He wrote at a time when donated blood was predominantly used whole; the National Blood Service (NHS) was held to be a practical symbol of mutual interests between citizens in Britain, and trust in the capacity of NHS authorities to supply safe blood was not publicly questioned.
Blood banking was set to change. By the mid-1970s, blood could be stored and transported more easily, facilitating the beginning of a more flexible system for supplying blood. The development of fractionation techniques allowed for blood to be broken down into components and reconfigured, leading to the great majority of donated blood being used in the manufacture of blood products (Farrugia, 2006). Blood was to become the raw material for an emerging industry that was to expand into markets throughout the world (Starr, 1998). The flexibility allowed for by these developments had been a goal of pioneer blood bankers, to allow for provisioning in mass emergencies. As the blood products industry developed further, blood plasma in particular became a commodity that could be imported and exported more easily, and the supply chain became more complex to manage (Starr, 1998). We can see in retrospect that, from the 1970s point onwards, the work of supplying blood products would be in some respects at odds with the traditional image of blood services, especially with the notion of national blood banking.
Notwithstanding these substantive changes, blood services received relatively little public and political scrutiny until the 1980s, when the HIV/AIDS crisis brought the problems, risks and hazards inherent in blood banking to wider attention. Some officials and organizations were prosecuted for their failure to act to protect the recipients of blood after the risks of HIV infection were known (Casteret, 1992; Rabinow, 1999; Starr, 1998). Although others emerged relatively unscathed from the crisis, with it came the dawning recognition of the possibility of vested interests in the supply of blood products.
More recent sociological writing about blood banks is anchored with an awareness of the unfolding consequences of the transmission of the HIV virus through blood, and of the risks associated with receiving blood products. This in turn opens up scrutiny of the impact of ongoing processes of modernization, globalization and commercialization in blood systems. Even where blood services are organized by national state authorities, the impact that global commerce, disease and travel are such that they can no longer be regarded as having national boundaries (O'Neill, 2003). These changes may be theorized in terms of the threat they pose to the association of blood banking with ideals of solidarity and altruism (Waldby and Mitchell, 2006). The discussion of the apparent erosion of mutuality in this context can be linked to a broader consideration of the extent to which social life is becoming ‘de-mutualized’, and the ways in which there is resistance to that process (Williams, 2002). However, the question of blood safety has long been on the agenda for blood bankers, who from the outset had to countenance and manage the risks of recipients contracting infections from blood (Berridge, 1997).
While the blood service in the UK is in the process of modernizing to ‘create a service fit for the 21st century’, this process is focused on organizational and technical innovation (NHS Blood and Transplant, 2007: 8). Blood donors are widely described as ‘altruistic’, yet little research has been undertaken to explore the broader social meanings of donation today. This article focuses on blood donors’ narrative accounts, and explores their potential significance for contemporary blood services.
Cultural accounts of donation: sociological perspectives
Recent sociological work about blood donation offers some theoretical and methodological approaches around which the discussion of the data presented in this article can be organized. I begin with Healy's work on cultural accounts of ‘procurement’ of blood and organs. Healy approaches the question of blood donation by exploring how the meaning of blood is shaped by organizations and the regimes surrounding them. Drawing on large scale quantitative data, he began by exploring how donation patterns in state run, red-cross and blood banking regimes in Europe differ significantly from one another, developing an ‘institutional perspective on altruism’, by showing how these ‘collection regimes produce their donor populations by providing different opportunities for donations’ (Healy, 2000: 1633). More recently, looking at organizations responsible for ‘procuring’ organs, Healy (2006) shows how the production of a ‘cultural account’ of donation is an important facet of their work. I take from this approach a reminder that cultural accounts of blood donation mediate the meanings of such projects; these meanings have practical consequences for the procurement and supply of such tissues.
While civic virtue is often stressed in the public and political accounts of blood donation, we can consider this practice as simultaneously a ‘private’ and a ‘public’ act (Valentine, 2005). Bearing in mind the recent history of gay men's exclusion from donating blood, Valentine's (2005: 115) analysis centred on a critique of the construction of blood donation as a ‘participatory space of belonging’. One element of her critique is the consideration of the impact of practices of exclusion/inclusion for eligibility as donors. Such practices are central to the operation of blood services, and have become progressively so since 1983. Valentine makes the point that private experiences and accounts of donating blood – or not donating – may differ from public and more expressly ideological narratives.
Eliciting ‘private’ accounts about blood donation has its methodological difficulties, however. This is partly by virtue of the status of venepuncture as a ubiquitous technology in hospitals. In addition, many of the uses of blood for diagnosis, research and treatment, are long established and may be seen as unproblematic by patients and staff alike. Pfeffer and Laws (2006) show how people in a London teaching hospital tended to ‘turn away from’ the mundane technology of venepuncture, and to take it for granted. The respondents in Pfeffer and Laws’ study – who included patients and staff – often saw submission to venepuncture within hospital as appropriate, or expected; this acceptance of the taking and circulating of blood can be seen in terms of a ‘law of the place’ (de Certeau, 1988: 118, cited in Pfeffer and Laws). Their analysis also suggests that patients in their London hospital site had expectations surrounding the use of blood: they expected that the blood would remain within the hospital, that blood test results would be fed back to patients, and that the blood would not be used by commercial bodies. These expectations were sufficiently strong and consistent that Pfeffer and Laws (2006: 3022) describe them as an ‘implicit contract’. This and other recent work underlines the significance of attending to the nuances and complexities of donors’ accounts.
Contemporary accounts of donating blood to the UK's National Blood Services
Background to the larger study
This article focuses on an analysis of interviews with blood donors to one of the UK's four blood services, the National Blood Service in England and North Wales (NBS), whose primary remit is to supply blood components and other tissue products for use in medical care in the NHS.1 The aim of these interviews was to revisit and explore some of the frameworks and assumptions of blood donors, given the very limited sociological literature on these. One driver for doing this was that ‘Titmussian’ ideas about blood donation were being invoked in policy discussions about the development of a new national biobank in the UK (Tutton, 2004). Although the NBS has a remit to conduct research and development on current and novel applications of blood, I did not intend to focus specifically on this here.2 Rather, these interviews sought to explore the understandings and expectations of contemporary blood donors, in as open ended a way as possible. A full account of the development and formulation of these interests can be accessed online (Busby, 2004b).
Fieldwork and interviews at the blood centre
The fieldwork for this project included participant observation and discussions with donors and staff of the NBS at the same blood centre, and at several other locations in same UK city. Over the course of four months, many discussions, and conversations took place, and interviews were conducted with NBS donors at one city centre blood centre. In addition, observation, discussion with centre staff and analysis of NBS publications was undertaken. This article draws on data from 26 interviews with donors, who numbered approximately equal numbers of men and women, ranging in age from their late teens to late 60s, with most being in their 30s, 40s and 50s. (The identity numbers given refer to the sequence of all discussions with donors held in this centre. The analysis refers to 26 donors with whom longer interviews were held.) Before the fieldwork began, the proposed arrangements for interviews were reviewed by an NHS Research Ethics Committee, which agreed that it may go ahead.
The aim of this approach being to develop a narrative account of the interviewees’ experience as donors, and their view on this involvement, these interviews were ‘semi-structured’. Interviews often began with a question about when a donor had first donated blood – ‘Can you tell me how you first became a blood donor?’ Instead of the fixed questions which were often expected, a topic guide was used to guide the interviews, covering the following themes: what is done with the blood; views on payment for blood donation; information; concerns or worries about giving blood especially at the outset. Donors were also asked about their views on research, beginning with a question about whether they would see giving blood for research differently from giving blood to help people directly. These issues were not pursued with detailed questioning, if interviewees did not seem comfortable with discussing them. There were two grounds for this reticence on my part, one methodological, the other ethical. The primary aim was to gain an overall narrative account of the donor's perspectives. Too many questions, or questions that were too specific being repeated, seemed to impede the narrative flow of the account. I was constrained too by a concern not to intervene in people's understandings of blood systems. I knew little about the research uses of blood. I was not able to answer questions that people might (and did) put to me in response to my own questions. Given that both I and the NBS considered their blood donations to be important, I did not wish to dwell on research uses, if the donor wished to avoid talking about this. At the end of the interview, people who had been donating blood over some years were invited to talk about how the experience had changed over time.
Analysis
The approach to analysis can be described in three stages.
Grounded theory techniques were used to explore donors’ accounts in the discussions and interviews conducted in the course of the early weeks of the fieldwork (Strauss and Corbin, 1990). Several key phrases emerged from these analyses of preliminary discussions with donors: for example, ‘blood bank’, ‘limits of expertise’. These sensitizing themes influenced how the work was taken forwards in a number of ways. The first of these themes refers to an image of traditional blood banks that anchored accounts of donating blood for the NBS, and is explored further in this article. This image of blood banks is predicated on a model in which such facilities were organized on a local, regional or national basis. It is the idea of ‘self-sufficiency’ in blood supplies within a community, rather than the exact boundaries of the blood bank, that is important here.3
The second theme refers to donors’ responses to my many questions about blood, and how it is used: interviewees often drew my attention to what they felt were the limits of their expertise. A common response to my questions was to indicate that donors could not be expected to know about or understand research: in asking them I was ‘going beyond’ their expertise. In the early interviews my questions about what kind of information people looked at, and what they thought about the uses which were made of blood frequently elicited fairly brisk, even dismissive replies: ‘I give my blood and now it's gone and I have no views’ said one man (NBS 17). Another captured the spirit of these discussions when she said that she had ‘no idea’ what the blood would be used for (NBS 25). Many commented that they trusted the blood service and the relevant authorities to make the best use of their blood, and did not feel the detail to be their concern. These recurring comments, often couched in terms of ‘trust’ challenged my assumption that I could analyse people's decisions in relation to the information they had access to about blood services seemed to have been misplaced. The importance of information as a keystone for the consent process for tissue donors has been prominent in UK government policy in recent years. Yet it emerged that in this particular case, of blood donation, donors did not see information as the basis of their consent for their blood to be used. Most donors stressed that the details of what happens to blood after it is donated are not of pressing concern. One long-term blood donor explained his difficulty with my questions to me in this way: ‘The problem is once I've given it what they the NBS do is it's up to them. I mean once I walk through the door I forget about the NBS’ (NBS 100). This constitutes a methodological problem for the researcher who would like to understand the donors’ point of view about the uses of blood through an interview. As Hoeyer (2003) has observed of the process of researching with donors, there is a sense in which an interviewer constructs a request to the donor to discuss something which is a physical practice often performed by turning away.
The second stage of analysis involved the use of a data matrix, to summarize the donors’ circumstances and the context of their interview account – for example, the length of time they had been a donor, and the particular issues which they had raised.4
Added to the biographical and contextual summaries for individuals interviewed, notes on specific points in the transcribed data were coded and briefly noted. A summary note of their views on the uses of blood was made in each case. This matrix was also used to include other discussions held in the course of observation at the blood centre. Having been coded and written manually, these data were stored on a spread sheet, which enabled them to be indexed for subsequent recall and analysis. Each interviewee, along with other donors with whom I had brief discussions, was given a unique number, which is the number referred to in this text. Where the interviews are cited in this article, ‘I’ stands for the interviewer (myself), and R stands for the respondent.
Once these donors’ accounts were thus summarized, the final stage of the analysis involved relating the particularity of these findings back to wider themes in the literature. These wider themes from the literature, elaborated in the section on the sociological literature above, include the significance of mutuality in tension with the demutualization thesis in this context. Healy's (2006) argument that organizations procuring human tissues necessarily organize ‘cultural accounts’ of donation that support their work, and Pfeffer and Laws’ (2006) emphasis on the implicit nature of the agreements that exist between patients undergoing venepuncture and hospitals, are used to draw out the significance of these donors’ accounts.
Becoming a blood donor
Most donors attributed their initial involvement in blood donation to having the opportunity to give blood at a local venue, rather than to a more active moral rationale in the first instance. Next, they talked about the influence of other individual donors who they knew, and sometimes expressed a sense of obligation in this context. For example, some of the interviewees talked in terms of ‘replacing’ someone who had been a longstanding blood donor, but had become unable to continue due to ill-health, or someone who had died. When asked more about their continuing to donate blood, donors’ responses became in a sense more their own stories, with a range of reasons for doing so being expressed. For some this sense of responsibility began with awareness of someone in their own family who had been ill, so that the blood donation was imagined as being ‘to help somebody like my mum’. But it had then extended to ‘future patients’. Reasons for donating blood are intertwined and not easily separated.
The satisfaction which could be gained from giving blood was often mentioned: one woman, who first gave blood because her teacher at college suggested that she and other students do so, pointed out that ‘there's not much else you can do that gives you that kind of buzz’. Another talked about blood donation as a sociable experience which she looked forward to (NBS 41). She said that she enjoyed ‘being part of something’ as she lay down quietly on her own but with others similarly engaged nearby. Although it might be sociable, enjoyable, an important element of the experience for some was that it offered a refuge from commercialization: part of what makes it special, she continued, is ‘the idea that nobody can make any money out of … it just makes you feel good’ (NBS 41).
Being able to help was a source of satisfaction for many, when contrasted with other situations where they might feel less able to help. Others couched their involvement in blood donation more in terms of duty or obligation. Blood donation (of course) is something which is done with others in mind. However it was not seen as a sacrifice: many pointed out that giving blood did not cost them much. For some, the relationship to others was invoked through a dramatic, usually traumatic reason for giving blood: a family member being ill in hospital, a friend being diagnosed with cancer. For many though the awareness of blood being needed was expressed in terms of a growing awareness of the vulnerability of others when they encounter accidents, serious illness, unexpected operations – and an awareness that these unexpected disasters could happen to themselves and to those close to them. Thus the interdependence symbolized by the possibility of needing donated blood at a time of catastrophic illness or accident featured in virtually all of these accounts.
Among this group, the most common occasion for coming in to make a first blood donation was related to people's work, in that they had either attended a session with a work group or colleague or at NBS mobile sessions at their place of work. The days of mobile visits to large industrial workplaces were fondly remembered by some of the older donors, mainly men now in their 60s. Among those interviewed were men who had worked in the docks, in large factories, in big Royal Mail sorting offices in the city centre or for other companies since disappeared or privatized, like BT. One of these explained his experience of being of a blood donor over the years as follows:
A sense of wanting to, a sense of being part of this system which keeps the blood available because it might be me one day who needs it or someone in my family and if it isn't there then that's going to be a problem. So it's just something I think we should all do really. (NBS 10)
For these donors, there was a sense that the blood centre had become a participatory space and one that was no longer available through their work associations.
Blood banking and mutuality – limits and expectations
Many donors (approximately half) specifically used the phrase ‘blood bank’ in the course of these interviews, and others referred indirectly to this idea:
It's really a case of why not … I know people who have done it and I have a friend who has leukaemia, or who had leukaemia shall we say and you know you hear about other people who are blood donors because their lives have been saved as a result of being recipients of blood … All right I may be doing it the other way round, I hope that I never have to be the recipient but I'm willing to give because if I don't need it others will. (NBS 83)
Here the arrangement of donating blood is envisaged as being equally of use to oneself and to others. It is envisaged as an arrangement in which the risk that we may need blood is shared with others who may likewise become vulnerable. The mutuality of such an arrangement is enhanced by the thought that the health screening for blood donation can function as a health check. Often donors said it was recognizing the possibility that they might need blood themselves which enabled them to accept repeated, detailed and to my mind intrusive screening questions before they gave blood. Donors often pointed out that the fact of their being asked these detailed questions would be a source of reassurance that the blood was as safe as possible if they themselves needed blood in the future. Notwithstanding their knowledge of the part played by the blood service in passing on infected blood to some recipients before HIV tests were implemented for blood donors, these donors entrusted their blood to the blood service. The possibility of anyone needing a blood transfusion unexpectedly was often present in these accounts, and therefore donors also saw themselves or those close to them as candidate recipients. Among these donors then, we can say that the notion of blood banking as a mutual arrangement, as part of a strategy of pooling resources for responding to the risk of catastrophic illness or accident, were prominent. A narrative about mutual interests was still possible for these donors. This is so despite the risks that have come to be associated with receiving blood, and which risks are emphasized to donors in the course of lengthy donor screening procedures.
The donors’ accounts reflected the idealistic ethos that blood should be universally available. However, while performing their role as donors in this context, some contradictions do occur: first, while no-one seriously suggested that certain categories of people should not receive blood, ambivalence about those who do not give was sometimes expressed. Comments about those who should not receive blood were always expressed laughingly, jokingly: ‘I hope that people who won't give blood don't get it (laughs). It sounds awful that but I think God you know I give blood, and if I want it it's there’ (NBS 8). Within this system, it was felt that you could not reasonably specify exactly who should have the blood, despite the fact that there might be some people who you wished could not have it. Likewise, most felt that you could not specify what the donated blood could be used for. This was not a case of having no views on priorities for medical treatment and research. It was rather that the nature of the transaction was one of entrusting the blood to the bank to make the best use of.
Blood services were understood to be part of the NHS – as indeed they are at a statutory level. Donors felt that their voluntary donation was an intrinsic part of that system. Sometimes exceptions to the ideal of entitlement were mentioned in this context. There was for example the issue of patients in private hospitals: for some this posed a challenge to the ethos of the universal system, and it was felt that perhaps they should pay for the blood. Similarly, it was often said that blood should be used in this country. However, the case for these candidates (private patients, foreigners) to be excluded from receiving blood tended to evaporate if it was thought that surplus blood might go unused.
The extent to which the blood service is embedded in the NHS was emphasized in many of the donors’ accounts. Often this point was made in talking about instances in which blood might be required for accidents or serious conditions. It was expected that emergencies were dealt with by the NHS. ‘Operations, transfusions, babies’ were the examples usually given of points of crisis when blood might be needed. None of the examples given by any of the interviewed donors made reference to people being treated in the private sector. As with Pfeffer and Laws’ account of patients’ understandings of the circulation of blood in an NHS hospital, this was an implicit understanding, that only became clear when exceptions or ‘scandals’ were mentioned.
Comparisons were made with other countries in which emergency treatments were paid for by the patient, whereas here:
at least one thing at least if you're seriously ill you get to, you don't have to worry about the bill at the end because you know it's there. I mean if you're really seriously ill, a road accident, you're seen to straight away and when you work it out there's blood there. (NBS 100)
In the more discursive accounts the importance of the relationship with the NHS was made explicit, as was the ethos underlying voluntary blood donation. So here in my discussion with a female donor in her 30s:
- I:
what's special or particular about blood donation that money shouldn't come into it?
- R:
I think it comes down to that word donation in my head, it's like something you feel like, you feel good about it because it's a thing you do sort of in a voluntary sort of process and you enjoy doing because it's something you give the National Health isn't it? (NBS 41)
It was, one respondent replied, a problem of where to draw the line – the consequences of paying for blood at point of donation would cascade through the system altering it substantially:
People would say oh we've got to pay for this blood, why not pay for organs. And basically you're coming into a private health system or paid for private health system rather than a national health system and unfortunately, I'm being, by social inclination I'd prefer to have a national health service and a national blood transfusion service that's funded by the people without paying. (NBS 57)
Occasionally a scandal was referred to in which blood or organs had been traded in this country or abroad. Moral disapproval about these breaches of expectation was clear cut in these cases. But the extent to which blood is moved around different sites, fractionated, reconstituted as blood products, traded in an internal NHS market or imported from outside the national blood service, was barely present in these accounts. The importing of plasma products sourced from other countries, notably from the USA, was not discussed. These donors primarily characterized the use of blood as ‘for emergencies’. This is in contrast to the reported use of blood by the blood service in England and Wales, according to whom approximately 8 per cent of blood is used in emergencies.5
As we have seen, Healy proposes that organizations responsible for procuring human tissues for medical applications necessarily have to mobilize and present a narrative that promotes these activities as desirable. In this case, the accounts of blood donation produced by the NHS, with politicians and publics, tend to avoid acknowledging the complexities of producing and exchanging blood products. This information is not secret; it is included in corporate communications – publicly accessible to someone searching for it online for instance, but nor is it given any space in communication targeted at publics, patients or donors. This facet of the NBS's work rarely appears in the now many and varied corporate communications to donors. Another example of this absence of acknowledgement is to be found in the graphs depicting national blood stocks, of fresh donated blood in England, on a weekly basis on its website.6 The website does not offer analogous graphics on the import and export of plasma and blood products that are likewise central to the business of a modern blood service.
When these donors entrusted the NBS with their blood, they did not expect to be involved in making decisions or drawing boundaries about the use of the blood: it was for the organization to make appropriate decisions about its uses. However, they sometimes made it clear that they did not expect it to be used in other contexts.
- R:
When you read about it and you think do they sell it abroad and you don't, you're not giving it to do that are you?
- I:
No.
- R:
Do you know what I mean? Not for them to make a profit about it in some way. I know I know it probably gets ploughed back into the NHS and they need it but you don't give it for that do you? (NBS 8)
‘Having faith’ and ‘entrusting’ blood (and forgetting about it)
Donors’ understanding of the place of the blood service in the NHS was sustaining their commitment in several ways: through it they could imagine others’ need for blood, they could trust the organization to which it was given, and they expected, or at least hoped, that the blood would be used within this health system. In addition, several people mentioned the role that expert scientific and experts committees would play here. It was not that donors stated categorically that non-nationals should not receive their blood. Nor did they often feel sufficiently informed or expert to be certain of the moral boundaries around new developments that might involve the use of blood for research. However, where discussions arose about the use of blood by commercial companies – for whatever purpose – this kind of use was not seen to be within the terms of a national health service. Importantly then, the association of the blood service with the NHS played an important part in defining and delimiting the imagined uses of blood.
When asked about the uses to which the blood is put, donors were sometimes puzzled or alternatively embarrassed at their lack of detailed knowledge, as in the following example.
- I:
What can you tell me from what you know about the kinds of ways the blood is used once it's collected?
- R:
I think the main way is probably, just for acute care I would think, operations for people who would need regular blood transfusions. I would think that my blood would probably last about five minutes you know when it's been cleared because just for certain operations that's really my basic understanding of it. Just for surgeons to carry out operations. I wouldn't know what else it could be used for. I'm unaware of any other uses for it. (NBS 57)
It seemed that there was a gap between donors’ formal consent, as indicated on their signed declaration, and the uses for the blood which were prominent in their explanations to me – such as use in operations and other such emergencies. One woman explained the uses of blood as follows:
No I'm very lazy, I mean I know it can be used obviously for donation, for transfusions [yes] or I think they can split it all up and use the different components [yes, yes] for different, either again transfusions or research or whatever. I mean I have read at one time what they did, I mean I will admit, you just sort of, I know it's used and I don't care what it's used for. (NBS, 81)
This sense of ‘having faith in them’, or placing implicit trust in the organization, was one of the most consistent findings from these interviews with NBS donors. I observed that the detailed and specific information that was provided in the blood centre was not accorded much attention by donors during the time they spent waiting, and it seemed to play a small part in their interview accounts. Before I began interviewing NBS donors I was aware that each time blood was given, the donor signed a written consent form. The consent form formally indicated their written agreement for their blood to be tested, and then used for suitable purposes by the NBS, with research approved by an ethics committee being one of the uses set out in the donor information. Yet, when donors spoke about how the blood was used, few spontaneously mentioned the possibility that it might be used for research.
There are some resonances with Pfeffer and Laws’ study of venepuncture among hospital patients, in that for these donors, donated blood stored within the NBS blood centres, blood banks and NHS hospitals is also seen as ‘matter in place’ (Pfeffer and Laws, 2006: 3022). The implicit nature of this arrangement, underlined by the extent to which donors often disavowed knowledge of or responsibility for the uses of their blood makes it difficult to establish categorically what donors expect. A common response to questions about the use of blood for research was to indicate that donors could not be expected to know about or understand research, and to reaffirm principles that had already been stated:
- R:
So therefore if blood and research and different things then like … I said I've come to the session, I've give my blood right, I've had my cup of tea and my biscuit and like I say when I go through the door what the Blood Service do with that it's up to them.
- I:
You leave it behind mm.
- R:
I mean if they say to me ‘Your pint of blood is going to research.’
- I:
They won't, I mean that's not …
- R:
But I'm saying, if they said to me ‘Well you've give a pint of blood today, it's going for research’, it would probably save some lives, not save one life it might save three lives all well and good providing it's used for people in this country and nobody else. I don't like this idea that my blood is going to some, any Tom, Dick and Harry outside the UK that's what I'm saying.
- I:
So it's very important to you that it's a national blood system?
- R:
It is a national thing and I think, and I feel very strongly. If they said to me ‘Oh well we're going to start sending the blood all over the place’ I wouldn't have it. It's the same as paying, if you want to do that no. (NBS 100)
According to this donor, the blood service – or the NHS – was to put the blood to the best use, which might include research.
Discussion
In this analysis, donors’ responses to interview questions are taken to illuminate some of the dynamics of involvement in blood donation. An important finding is that donors’ trust in the NBS is informed by its history and by the reputation of the NHS.
As Misztal (1996: 156) has written:
Habit, reputation and memory … all [are] means of preserving the past experience in order to construct a more predictable, reliable and legible present. They are all different but complementary strategies designed to help us to acquire a general sense of trust in the social world.
Trust is a valuable resource for blood services. However, the gap between the nostalgic accounts of blood banking, and the contemporary organization of blood services and industries is troubling, both in moral and in practical terms. As new challenges face those supplying blood sufficient in quantity and in quality, this disjuncture is likely to become more evident. The recent investigations of the Archer Inquiry into the impact of contaminated blood on people with haemophilia and others affected are testimony both to the complexity of blood services, and to the legacy of problems associated with a lack of openness about these systems (Boseley, 2009).
Blood services have had major changes to confront, in the interests of risk management and patient safety. It is fair to say that questions of narratives or cultural accounts have, understandably, not been foremost in the minds of NBS leaders and of policy makers. However, a decrease in the number of blood donors is of concern. The policy response to this has been primarily orientated towards improving ‘customer satisfaction’ with the convenience of donor centres and appointments, and towards advertising for new donors (NHS Blood and Transplant, 2007). Some sociological reflections on the ‘implicit contract’ between donors and the service may flesh out these dynamics further (Pfeffer and Laws, 2006: 3022).
The business of procuring and supplying blood has become increasingly complex and is an international one. For example, the Department of Health has for some years had a policy of sourcing plasma from the USA, following recognition of the possible risk of variant Creutzfeldt-Jakob disease (vCJD) infectivity posed by plasma from UK-based donors. A commercial division of NBS, the Bio Products Laboratory markets plasma products both to the NHS and to over 40 countries worldwide (Bio Products, 2009). Thus, donated blood can circulate widely, globally. Blood is managed and regulated as a commodity – a process that arguably contributes to safety for recipients. Yet the extent of these transactions and circulations is often elided in NBS literature for donors. At a time when there is new emphasis on openness and transparency between the wider NHS and its publics, the mismatch of nostalgic narratives and modern practices seems problematic.
Conclusion
Foundational stories about blood banking in Britain emphasize ideals of altruism, mutuality, national solidarity and the provision of whole blood for use in medical emergencies. Modern blood services in the UK on the other hand are characterized by the use of blood products, including products from plasma procured in an international market. The risks of receiving blood products are explicitly recognized and managed under modern formal safety regimes. These developments challenge the more literal images of reciprocity and solidarity that have historically been associated with collective narratives about blood banking.
These donors’ accounts are resonant of an older paradigm of ‘blood banking’. They may also reflect the very limited public discussion about dilemmas in managing, balancing and communicating risk in ‘blood systems’. While we have seen extensive research and public consultation in the area of novel biological products, there has been little engagement with patients and publics in the more ‘established’ field of blood products. A shift to a more open institutional narrative about modern blood services may be timely, as blood services face current and future challenges.
Acknowledgments
Funding from the Wellcome Trust biomedical ethics programme supported the doctoral research referred to in this article (Grant no: 062230, 2000–2004). The author would also like to acknowledge a Fellowship in Biomedical Ethics from the Wellcome Trust, between 2006 and 2009, during which time this paper was written, drawing on data collected previously. (Award no 080128/z/06). I am grateful to the journal's reviewers for their thoughtful and constructive comments on the article.
Notes
Previously, blood services in England and Wales were organized on a regional basis by NHS authorities. The transition to a national system began in 1993. In 2005, a new NHS umbrella body, NHS Blood and Transplant Authority, was given managerial responsibility for the NBS.
A second group of interviews was conducted with people who donated blood as a sample for genetic analysis, to a university research project. These interviews, which are reported elsewhere, addressed donors’/participants’ thinking about ‘genetic research’ in some depth (Busby, 2004a).
The ideal of self-sufficiency within national communities has been an important theme in blood policies in Britain, as in the rest of Europe, albeit one that is in tension with the reality of trade in blood products (Farrell, 2006; Hagen, 1993). See Archer et al. (2009: 26–46) for a discussion of the tensions inherent in policies aiming at national ‘self-sufficiency’ of blood supply in the United Kingdom.
See Ritchie and Spencer (1994) on the use of a data matrix as a tool in qualitative data analysis.
See How Blood Is Used at http://www.blood.co.uk/pages/e18used.html
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