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Keywords:

  • biobanks;
  • bioethics;
  • genetics;
  • morality;
  • policy;
  • Sweden;
  • trust

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References

In this paper I report on an ethnographic study of an ethics policy developed by a start-up genomics company at the time it gained all commercial rights to a population-based biobank in the town of Umeå in northern Sweden. Tracing the interdependencies between power and morality, my research compares moral reflections and stances among 1) policymakers, 2) health professionals and 3) donors, in relation to the issues identified in the policy. These people seem to agree that trust and fairness are important issues and that ‘something’ needs protection in the face of commercial genetic research. However, their perceptions of trust, fairness and what it is that needs protection differ significantly. I conclude by considering the implications of variances in moral perspectives for the social study of ethics.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References

Today the concept of ethics is much more widely in use in policymaking circles than just 20 or 30 years ago. In particular, those providing health services seem attracted to the idea of developing ethics policies for a range of issues. The use and storage of human tissue in so-called biobanks is a particularly apt example of this ethics policymaking tendency. Though part of normal routines in all European welfare states for almost a century, it was not until the 1990s that biobanking became subject to ‘ethical regulation’. By ethical regulation I mean policymaking explicitly presenting itself as motivated by ethical or moral concern. ‘More ethical regulation’ sounds almost irresistibly benevolent, but it is not obvious what it is that the health sector is getting more of in the name of ethics. Is ‘more ethics’ the same as ‘more ethical’? And how can this issue be explored empirically?

José López (2004) identifies two broad forms of sociological engagement with bioethics: one inspired by political analysis focusing on ‘the wider historical, political, cultural and economic conditions of the possibility of bioethics as a discourse and an institutionalised practice’ (2004: 877); the other inspired by ethnography focusing on ‘how moral values and ethical behaviours are embodied and lived by social agents’ (2004: 878). Bioethics lives a double life: it is both organisational practice and moral dilemma, both politics and morality. Nevertheless, few studies combine power analytics with ethnographic sensitivity towards the dilemmas and values of social agents; thus bioethics is represented as either an expression of power or of morality, but rarely both. In this paper I seek to bring these two dimensions of bioethics together by exploring the social life of moral concerns in a concrete policy process in northern Sweden.

My research is focused on an ethics policy developed by a start-up genomics company, UmanGenomics, at the time it gained all commercial rights to a population-based biobank in the town of Umeå in northern Sweden. The ethics policy had at its core an increased emphasis on the use of informed consent in relation to tissue-based research, and in several prestigious journals it was favourably compared with that of a more widely known Icelandic counterpart, deCODE Genetics (Abott 1999, Nilsson and Rose 1999). To explore the local context, rather than its international reputation, my study describes the concerns articulated and acted on by policymakers, nurses – who implement the consent requirement – and donors, for whom and on whom the policy was supposed to work. I begin with some general reflections on how to study ethics as policymaking, before describing the concrete policy process in Sweden. In particular, I explore the way three topics, namely trust, protection and fairness, are problematised differently by policymakers, nurses and donors. In conclusion, I suggest contemplating the power of ethics with increased awareness of the ways in which it potentially acts as a double-edged sword both serving as leverage for the discursive regulation of moral concern, and as a forceful restraint on potentially exploitive power structures.

Studying power and morality

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References

In line with the distinction introduced by López, anthropological ethnographers working with bioethics tend to portray ethics as a particular form of power (based on universal knowledge claims), which impinges on local moral worlds (cf. Kleinman 1999). From this perspective, ethics policies are related to the ethical only by name: they are essentially an execution of power1. However, for the social scientist wanting to understand both the type of regulation executed in the name of ethics and the organisational change it produces in the health services, it is not enough to see ethics solely as an imposition of power. Rather, ethics is a form of power that works only when it manages to present itself as morally relevant.

As we know, moral concerns differ according to one's social location. My study takes this sociological evidence one step further by showing how moral concerns emerge during, and are defined through, the very process of problematising particular aspects of life in particular social institutions2. Seen in this light, an ethics policy is a product of connected concerns rather than an attack on local moral worlds, as those working in the critical ethnographic tradition often point out.

As we will see, the ethics policy that I studied emerged through wider social institutions and networks of obligation (Powell and DiMaggio 1991), in which nurses responded to the initiatives of county officials and health consumers responded to nurses, with an unanticipated outcome (Lindblom 1959). Important aspects of the wider historical and institutional context for the ethics policy I studied include perceptions of medical progress and the welfare state. Ethnographic literature often emphasises how the construction of the Swedish welfare state is intertwined with popular social movements, namely the temperance movement, the workers movement and the free churches (Ambjörnsson 1998, Frykman and Löfgren 1987). Self-discipline, solidarity and trust in science were central concerns in these movements, and even today, northern Sweden is characterised by solidarity and egalitarianism (Bondeson 2003: 50). The institutional context reflects both power and morality.

It is through ethics policy that moral concerns get a social life (cf. Appadurai 1986). The policy relates people to the concerns of others, and the analytical task is to unravel the ways in which some moral positions are respected and entrenched in organisational structure, while other concerns become marginalised and excluded from organisational influence. This implies, among other things, studying a series of ‘productive misunderstandings’ (cf. Löwy 1992) where the same words are imbued with different meaning, and some taken-for-granted positions avoid confrontation with other taken-for-granted positions by way of tacit misunderstanding.

Identifying policy problems

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References

UmanGenomics, the company that initiated the ethics policy I analyse, was created by Umeå University in collaboration with Västerbotten County Council. The policy was produced at the time UmanGenomics was assigned ‘all commercial rights’ to a biobank containing blood samples and questionnaire data from the greater part of the adult population in the county. The company management hoped that the policy would pre-empt public criticism of the new usages. Samples had been collected since 1985, as people at the age of 40, 50 and 60 attended a preventive medical examination conducted by publicly employed nurses at the county healthcare centres. While various, similar versions circulated, the policy was never written down in an official, certified version. It was described orally and in different articles and leaflets as a ‘model’ focusing on public oversight and control in three forms: a) public majority ownership of the company; b) approval by a regional research ethics committee; c) individual consent from all donors. Sometimes, separation of the company and the biobank was also described as part of the ethical model (and was presented as a safeguard against commodification of human tissue), and sometimes community benefit-sharing was emphasised. Local establishment of the company, in contrast to facilitating access for foreign companies, was emphasised at press conferences and during interviews, but not explicitly fitted into the public descriptions of ‘the model’. The role of individual consent was emphasised the most.

Three types of actors were central to this policy process: 1) policymakers, 2) policy workers (namely nurses obtaining informed consent for blood collection during the medical examinations) and 3) members of the policy target group (potential donors). These three levels are distinguished by different means of influence on the policy. Policymakers respond to their assumptions about what donors would prefer and then name and frame the consent requirement as a particular object for organisational intervention. In turn, the consent requirement creates a space for action, which can be used by nurses. Through the (often unintended) ways of using this space, nurses are part of shaping the conditions of possibility for potential donors, who in turn give their own meaning and content to the procedures set in motion. In my analysis I examine both what people say and the concerns and values embedded in acts, e.g. the act of donation.

Fieldwork was conducted intermittently from June 2000 to February 2004. I interviewed and interacted with the central policy makers and read their contracts, letters and other official documents; made observations at five healthcare centres and interviewed nurses conducting the preventive medical examinations; observed 57 potential donors as they donated blood (or declined) during this examination, and subsequently interviewed them. My data come from observation, participant observation, document analysis, semi-structured interviews and various forms of informal interchanges, and from two surveys of public attitudes to biobanking and informed consent. Policymakers were identified by way of ‘snowballing’, i.e. every interviewee was invited to help identify other persons who in their view had influenced the policy process. Nurses were encountered at the healthcare centres, and the centres were selected to ensure representation of the rural region in the interior, smaller towns in the interior, the periphery of Umeå, and the centre of Umeå3. Potential donors were offered written information by the nurse about my study in which I stated my interest in their attitudes to new forms of medical research, and were asked by the nurse to confirm their willingness to participate prior to the examination, at which I would then be present. In this way, the informed consent procedure for my study might have contributed to a selection of informants, primarily including those most willing to participate in research in general, i.e. those people most willing to view themselves as being obliged to help the progress of science.

The problematisations encountered through this form of fieldwork changed over time, not least in response to changing relations among various actors at the policymaking level. At the outset of the fieldwork and during the initial presentation of the ethics policy, central actors behind the biobank (in the company, the university, politicians, and public servants in the county and the university hospital where storage facilities were provided) seemed to agree on the arrangements made for the biobank, including the content of the ethics policy. Substantial disagreement on the dispositional rights in the biobank, however, slowly surfaced; this produced an intense and pernicious conflict between decision-makers – including those in university management, the company and the county council – and the researchers working in the biobank. Basically, a group of researchers who played a part in founding the biobank wanted to retain some control over the stored tissue, despite the contracts written with UmanGenomics. Analysis of the conflict is not the aim of this paper, and can be found elsewhere (Hoeyer 2004, Laage-Hellman 2003, Rose 2003). Nevertheless, the conflict introduced a bifurcation among the group of actors originally identified as being in a position to influence the naming and framing of policy issues by way of the organisational network.

My analysis of the different modes of problematising found among the three types of actors reveals three issues common to all groups: trust, protection and fairness. Policymakers repeatedly mentioned trust as the main objective of the consent requirement, and trust was analytically significant for understanding donors’ willingness to participate in the biobank collection. With regard to protection, everybody seems to believe that something, ‘X’, is in potential danger of being infringed by commercial genetic research, but each group has a different idea of what needs protection. Finally, notions of fairness are articulated independently by donors, nurses and policymakers.

Trust

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References

At the time of the formation of UmanGenomics, people at the policymaking level were concerned that commercial genetic research might cause an erosion of trust and during the policy process most policymakers came to agree that people would be requesting more information to protect their sense of integrity. Consequently, more elaborate information sheets were produced. From this perspective, informed consent is an organisational requirement for establishing a trustworthy relationship between biobank research and individual donor. In contrast to this logic, nurses tended to think about trust from a more concrete and personal perspective reflecting their professional position. As policy workers they did not simply implement the policy: they saw consent as mostly an issue of responsibility. Some, for example, argued that the strengthened consent requirement was a relief to them, as ‘the donor now writes a contract with the county council’4, as one nurse put it, implying that they as nurses were less personally responsible than previously. Accordingly, some began providing less oral information than they had formerly done. Others felt an increasing sense of responsibility and simply stopped asking for blood. Two such nurses explained to me how they thought of themselves as ‘mothers’ asking people to donate for purposes they knew nothing about, which violated the maternal care their patients expected from them. This very personal sense of responsibility was articulated most in rural areas, where nurses tended to know their patients. In both cases, however, trust has not so much to do with the provision of information as with the notion of a responsible agent: somebody (themselves or the authorities) worthy of trust.

Trust is also very important for potential donors, the policy's target group. Though few people read, remember or recall the information provided, most sign the consent form and thus donate both blood and questionnaire data. Hence, the biobank rests on an act (donation), which can be interpreted as an expression of trust. During interviews, people often articulated this trust as hinging specifically on public oversight and control. One man said: ‘I have great trust in the health services and research ( . . . ) So if [the blood] can be of use for somebody else, please let it . . . Because I'm not worried about abuse, and all that’. He had the feeling that he was first and foremost donating to a public biobank (though realising that a private company would have access to the samples), and he explains why he thinks he can trust the county:

It stems, kind of, from society, which means . . . it isn't created for the sake of profit. But with a commercial company it appears a little more precarious – what their objectives are. Still, if there's some kind of overseeing from the authorities in relation to what they do, it feels quite alright.

Interestingly, the Swedish word for oversee is in-sight [insyn], as in seeing into something otherwise hidden. This metaphor relates to a sense of the public domain as a place where ‘we’ are ‘sharing’. Implicitly, this domain tends to correlate with some sense of bounded locality. Hence, the following statement was not unusual in its association between unanticipated uses and foreign places:

. . . It's this worry about where it's going to end up. What it’ll be used for – if it's just these things mentioned in the letter or if it's . . . well, if it is passed on, is sold on, sent along to something, perhaps . . . That's what I felt.

Importantly, this woman could not remember the content of the information sheet, and, like the majority of her fellow donors, she could mention no specific uses that she would not approve of, only illegitimate purposes and motives. Donor trust seems to include a notion that not only will the local authorities ensure overseeing and control – they will also figure out what to control. If donor trust were to be broken, it appears that it would be on the grounds that the biobank was being used for objectives other than those motivating the donations: interest in furthering science and healthcare.

It is important to remember that donors are asked to donate at public healthcare centres. As citizens taking part in a shared welfare state project, they feel obliged to respond to public demands; ‘to do their share’ as it was often phrased. The donors want to pre-empt potential moral criticism for selfishness by performing their duty as citizens and contributing to public health efforts with blood and data, much like county politicians and university researchers use informed consent procedures to pre-empt moral criticism and ensure trust in the authorities. Even if a consensus seemed to prevail among donors that public health should not be sidestepped by profit interests, there is no agreement among donors regarding commercial involvement in research in general (some expected it would speed up the research process positively, others were strongly opposed to any form of commercial involvement).

During the development of the conflict concerning the dispositional rights in Medical Biobank, which gave rise to some unfortunate publicity, most policymakers began worrying that public trust was endangered. This, however, did not influence the number of issues addressed by the ethics policy, though it did influence the interpretation of informed consent. The emphasis on information was increased and more information was sent to encourage donors’ approval for the activities of each party of the conflict. From the perspective of the policymaking level, it became essential to establish who provided and defined the content of information sheets, but adequate information was still seen as the key to public trust. Perhaps this signals a lack of feasible alternatives, rather than a wholehearted belief in information as a tool for building trust.

Protection

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References

The ethics model presumably aims to protect the individual through the requirement of informed consent, a statement often made by policymakers and common also in the international literature on biobank ethics. Closer analysis, however, shows that this is not the perception held by the donors that the policy is designed to protect. Policy discourse centres on protection of blood as a physical substance from commercial trade. Trade in genetic codes is perceived as legitimate by policymakers, however, only once genetic codes are transformed into de-personalised, patented information. Few donors agree with this distinction between genes and knowledge-about-genes and most strongly oppose patenting of DNA. Policymakers and donors thus hold divergent understandings of what it means to infringe the integrity of the donating person. Also, while policymakers never mentioned ethical problems associated with the questionnaires collected along with the blood, some donors saw the use of questionnaires and health records as more sensitive than blood samples (Hoeyer 2002). When nurses were identifying problems, they focused on the structures responsible for what happened to the blood. From the perspective of the nurse, these structures determine whether donors were wise to donate a blood sample. Hence, nurses most often mentioned organisational integrity and transparency as the problem that needed to be addressed.

Though some donors wonder where their material will ‘end up’, most of them focus on the consequences of research using their material, rather than use of the material per se. In general, they express optimism that research will contribute to alleviation of human suffering. However, the commercial element, though welcomed by some, was generally seen as a potential threat to the integrity of research. For example, one man explained that, in his view, commercial research was inevitable, but it was acceptable as long as it was good research. Most donors felt that research into drugs that would not treat serious health problems, or that would be unavailable to those in need, was pointless. Health is perceived as ideally beyond economic interests, as this man, among others, pointed out:

[Money] shouldn't need to affect the health services – they [the health services] must be able to bear the costs whatever the costs are without any other limitations than the help it is possible to offer ( . . . ) . . . really, if it were to be proper . . . common sense.

From the perspective of most donors, what is perceived as in need of protection is the integrity of research and values of solidarity with those afflicted by medical problems. It is, of course, difficult to define medical needs, as exemplified in the debates about lifestyle drugs versus treatment of serious illness, which have surrounded genetic medicine. The point is, however, that the majority of my respondents donated for the sake of ill people. Along similar lines, it is reasonable to see the resentment expressed against patenting of human genes as a protest against breaches of solidarity: genes and genetic knowledge should not be monopolised by individual property holders. Accordingly, it seems safe to conclude that the main worry for most donors is that the research agenda will be controlled by interests other than those reflecting public health concerns.

Interestingly, the evolving conflict makes various policymakers who are deeply engaged in the struggle to define dispositional rights in the biobank increasingly eager to defend not only the biobank, but also the public image of science. Like donors, policymakers now find it relevant to protect the integrity of science. Members of the staff in the biobank, for example, write complaints opposing, on ethical grounds, the current university and county management, claiming that scientific freedom is under threat from short-sighted profit objectives. Though in this sense, sharing values and concerns with donors, there is no agreement among policymakers concerning how science should be protected, and because of the organisational conflict these issues cannot be transformed into a new ethics policy. When inter-organisational alliances cannot be formed, the voice of ethics seems to represent opposition, rather than co-ordinated regulation. And rather than harmonising inter-organisational relationships, the original policy now serves to delineate battlegrounds, e.g.‘what should be the content of the information sheet?’.

Fairness

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References

Questions of fairness draw heavily on a vocabulary of ethics and morality. Reflections on fairness surrounded the ethics policy of UmanGenomics throughout the studied period, and were articulated independently by most actors at some point5. If we distinguish between issues perceived as fair (to be promoted) and not-fair (to be avoided), the fair type of issue tends to revolve around benefit-sharing and the not-fair around what, in a local concept, is called baggböleri.

In the 19th century, the Baggböle manor house, 12 kilometres west of Umeå, acquired an unsavoury reputation for buying up the main local resource, the forest wood, too cheaply and selling it off to companies abroad. The profit left the region impoverished (except for a few wealthy traders concentrated at Baggböle), and such callous exploitation of local resources came to be known as ‘baggböleri’. At the time of the establishment of UmanGenomics, the university, the county and the company made it clear that they wanted to avoid baggböleri and instead keep the jobs and profit in the region. Public majority ownership of UmanGenomics was one measure to achieve this objective. As the company began facing problems raising venture capital, however, it was attributed to the dangers of political control of private enterprise. In 2002, the most influential actors therefore re-wrote the contract between the county, the university and UmanGenomics. The new contract excluded the clause on public majority ownership and replaced it with a clause stating that the company could not leave the area without losing its rights to the biobank. This was explained as a way of ensuring continued public involvement, but it implicitly reduced the previously accepted idea that public ownership was a way to ensure both overseeing and direct community benefit-sharing. Benefit-sharing was still an issue, but rather than relying on public ownership, it was now perceived as relying on regional development through provision of a viable commercial environment; without a viable company, it was sensibly argued, there would be nothing to share.

In contrast to the broad notion of regional development, most nurses were concerned with specific ways of ensuring what they perceived to be fair. In the rural areas, unfair ‘baggböleri’ was related to criticism of those posh people in the main town, Umeå, who disrespected local work and interests. Many nurses worried that the powerful interests surrounding UmanGenomics would deter the attention otherwise paid to the preventive healthcare programme. Some wanted the company to return part of the profit to the preventive programme and at least eliminate the standard charge for the physical examination, and perhaps offer participants a sandwich or a soft drink. Hence, when it comes to ideas about the sharing of profit, the nurses have a much more concrete notion of fairness than the modified policy suggests. It is important to note, however, that there is also no consensus among people operating at the policymaking level. Indeed the research group associated with Medical Biobank has strongly advocated a concrete return of profit; but unlike nurses, they believe the money should be used for a research foundation under the control of researchers. This idea has not received support from the founders of UmanGenomics, the university management, or the county, who wanted the company to control its own assets.

Donors, conversely, often raise concerns about what is sometimes called the rule of the Money-Devil, i.e. when profit overrules other considerations. Several donors associated private companies with international capital and saw the problem of ‘baggböleri’ mainly as a question of lack of local control and of the rich deceiving the poor. Benefit-sharing, on the other hand, was articulated in various ways often emphasising that any profit should be used for the objectives associated with their donation. One woman, who had never before contemplated the fact that medical research could be undertaken commercially, said: ‘It is important that the money circulate back where it comes from. That it will be used for research’. Others emphasised the importance of not letting one area of interest prevail over others, as this man explains: ‘I guess it's important with research breadth [a wide agenda of medical problems]. And to ensure that there's an even level for everything’. Others wanted profits to go straight to the authorities and the delivery of healthcare. Even more dominant was the view, also expressed above, that everybody should have equal access to the health benefits emanating from research. In addition to this aspiration, one woman reflected on the changed ownership structure of the company by saying:

If it benefits your purposes, I don't think you should pin yourself down to something being ‘owned by the county’[stressed in an ironic tone], or not. As long as it won't result in only those with money enjoying the benefits of the products. It has to be on equal terms for all, I think that's important. But then how the ownership issue is handled, that doesn't matter, does it?

Asked whether people would have liked to receive money for their donation as part of the profit, only a handful even considered the idea (Hoeyer 2005). One man, who had just said that the offer of money would make him doubt the purposes of the project, went on to say:

If they should develop some absolutely revolutionary drug and some researcher would call and say, ‘we found a new drug for cancer thanks to your blood sample and here's 5,000 kronor’– yeah, but then I'd be really happy! But I would probably send it on to some child in Brazil or something. Because I'd like the profit they make, that they spend a good part on . . . the developing countries and all that.

On the whole, these people do not want personal gain. They want to further the alleviation of suffering, and their donations seem motivated by a sense of obligation to participate in a shared project to achieve this objective. Their donations express trust that the authorities will work towards this end. However, at the policymaking level only, more manageable issues become entrenched in the ethics policy. Indeed, no policy would ever be able to address all worries mentioned by potential donors. Nevertheless the patterns in the divergences between the levels are interesting and are summarised and discussed below.

Contested ethics or emergent ethics?

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References

Bearing in mind that it leaves out a number of minor variations, Table 1 is presented to help illustrate the tendencies described in the preceding three paragraphs. The form of power produced in this policy process is not simply trickling down from ‘higher’ to ‘lower’ levels; from left to right side of the table. Rather, actors at the policymaking level are subject to various forms of pressures such as anticipated reactions from donors, and they are often unable to address the issues they personally find most compelling, as illustrated by the aforementioned letters of complaint from Medical Biobank. Potential donors find themselves in situations where they are expected to exercise a personal choice through informed consent, though they tend to prefer trusting the logic of mutual obligations embedded in the state-citizen relationship to make the authorities take responsibility for scientific enterprises. Hence, the policy is a product of many actors, of volatile alliances and unintended re-interpretations between people with different frames of reference. Nevertheless, the features that can be acted on and become part of the policy constitute a form of power, which structures social relations: the policy creates space for action for nurses and donors by naming informed consent as a central moral concern. It is a form of power which needs to present itself as morally relevant and it does so partly by way of open concepts such as ‘baggböleri’, which leaves room for productive misunderstandings. In this sense, the policy is a product of a complex ethico-political process, rather than the result of somebody's intention or authority.

Table 1. Tendencies in different problematisations at the three analytical levels
 Policymaking levelPolicy workers (nurses)Target group (potential donors)
TrustAdequate information is essentialResponsibility is essentialLocal overseeing and control to ensure usefulness for those in need is essential
ProtectionThe individual's biological body needs to be protectedInstitutional integrity and transparency need to be protectedScience and solidarity need to be protected
Fairness– Baggböleri is when money leaves the county. – Benefit-sharing is regional development.– Baggböleri is when posh people in Umeå disrespect local work and interests. – Benefit-sharing is when profit returns to the preventive healthcare programme.– Baggböleri is when the ‘Money-Devil’ rules, i.e. when profit overrules moral considerations, and the rich deceive the poor. – Benefit-sharing is when all population groups get equal access to research results; securing more research; securing local interests; securing the public part of the profit.

A question we need to consider is whether the table represents contested ethics or emergent ethics. In the first view, people in different subject positions can be assumed to hold particular moral values which are then contested in the process. Alternatively, the policy process and the differences in problematisation can be viewed as the social basis from which moral values and positions emerge. In this view, the institutionally framed strife is the very stuff that ‘ethics’ is made of. Whereas the choice between the two interpretations will rely on definition and theoretical framework rather than empirical evidence, it is relevant to clarify how my study propagates the latter view. From the perspective of emergent ethics, moral positions emerge in institutional contexts where people relate to each other in particular ways and occupy particular positions. The policy process produces reflections on responsibility; it makes people engage in morally obliging interaction and it produces new discourses on ethics. It is likely that my interviews engaged donors further in such a process of what might be called ‘responsibilisation’. Organisational power and moral life are not different entities colliding with each other; they are co-produced6. The objects of moral thought, and the action which is experienced as legitimate, are shaped in an institutional context, while notions of moral legitimacy simultaneously shape the boundaries of feasible organisational action.

The idea of emergent ethics, however, is subject to one important qualification: most people involved in the policy process I studied experienced it as a contestation of ethics: they felt their moral values threatened by a power play. In fact, they would often use the language of ethics to produce the most effective weapon in the struggle against the organisational features they considered most unfair or immoral. For these people ethics is the antithesis of power. Accordingly, for them the language of ethics serves to challenge institutional structures and oppose forms of power deemed illegitimate. If we propagate the emergent ethics perspective we implicitly undermine the rhetorical strength of the people here described as a ‘target group’; those people least able to directly influence the naming and framing of moral concerns at the policymaking level. The perspective of emergent ethics rests on a moral relativism, which is a theoretical and methodological choice, not a statement of definite truth.

The perspective of emergent ethics makes visible unacknowledged variations in the moral understandings of different people. These will always exist, and productive misunderstandings can facilitate interconnections and action, as argued above (cf. Löwy 1992). Indeed, the reintegration of the moral understandings of policymakers and donors is an important first step toward moral accountability. Benefit-sharing is one area where dialogue between different parties can ensure accountability. As Alan Petersen noted in relation to UK Biobank, citizens were offered strong assurances ‘about the potential scientific value and public health benefits’, but were given ‘few details about the nature of these benefits’ (Petersen 2005: 281). The direct involvement of private companies in the construction of a research infrastructure, as described in this case, raises important questions about the distribution of profit and the objectives of the research agenda; and yet, few analysts offer advice on organisational structures with in-built mechanisms for benefit-sharing. A notable exception is Haddow et al. (forthcoming), who describe procedures designed to ensure democratic representation, overseeing and benefit-sharing according to the judgement of these democratically elected organisations. Where implemented, such a procedure constitutes an example of ethics embedded in the very organisational structure. It will then define the future spaces for action for people with different agendas. We will therefore continue to need several modes of enquiry (Rabinow 2003), some providing solutions, others identifying problems.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References

The introduction of ethics as a form of regulation has important implications for the healthcare system, not least in relation to its research obligation. As we have seen, it operates through both organisational mechanisms (as when nurses respond to their superiors’ demands) and the moral life of the individual. This regulation encourages particular forms of personalised responsibility for both nurses and donors. During the conflict on dispositional rights, even policymakers began to use the vocabulary of ethics in ways representing an individualised response to the organisation. The arguments posed in the name of ethics tend to revolve around notions of altruism and therefore explorations of such moral notions are crucial to comprehend organisational behaviour.

My study also makes clear two distinct meanings of the power of ethics. On the one hand, we have seen ethics as a form of power that marginalises and excludes some moral positions while allowing others to become entrenched in the organisation structure. On the other hand, we have seen ethics used as a vocabulary for critique of power structures.

With regard to the first meaning of the power of ethics, my research shows how the elites determined the boundaries of legitimate moral concern with regard to consent, justice and ethical issues raised by nurses and donors. The ethics policy I studied used informed consent as a way of generating trust – the focus on ‘informed choice’ was less about ensuring that participants understood all dimensions of the research than it was about gaining co-operation. The ethics policy also defined blood and genes as physical substances (in contrast to knowledge about genes, which is perceived as patentable information), and, as a result, justice came to be understood by the local elite as one anticipated product of regional development, not as the fair distribution of health improvements generated by research. Finally, the ethics policy addressed only ‘manageable’ issues. Moral positions highlighting themes other than these were marginalised and excluded from organisational impact. The emphasis of nurses and donors, on the need for a responsible agent to protect community solidarity and to ensure the fair use of donated blood for those in need, did contribute to the shaping of everyday practice, but their moral concerns had minimum impact on the organisation and on decisions made for the biobank.

The self-interested use of ethics by the elite should not, however, cause us to overlook how the moral power of ethics can be used as a force for change. As social scientists we are quite familiar with the way bioethics is co-opted by the powerful – including politicians, corporations, funding agencies and the media – but we must not ignore the way ethics is used as a tool to challenge social power and to give shape to visions for a better life. When we sociologists of bioethics (De Vries 2004) attack moral discourse as nothing more than the expression of power, we give greater weight to the social power of ethics than we do to its moral power, diminishing important meanings of ethics and reducing ethical critique to just one moral position among many. My research shows the power of ethics to be a double-edged sword: yes, bioethics is used by the powerful to promote their interests, but it is also mobilised to challenge those with power. Those who study the social dimensions of bioethics must understand the value of ethics to the powerful and to the vulnerable.

Notes
  • 1

    Three notions of ‘the ethical’ seem to prevail, namely: 1) one's personal sense of right and wrong, 2) a notion of what most people (society) think is right or wrong, 3) what is ‘really’ right or wrong, i.e. the idea that it is possible to move beyond one's personal or society's views and contemplate what ought to be, rather than what is. In relation to the ethnographic criticism it is important to note how an ethics policy is typically described as representing a ‘personal’ or ‘societal view’, while the criticism of its impact implies a notion of ‘really right or wrong’: the policies are described as circumventing morality; they are seen as ‘unethical’.

  • 2

    In my approach to problematisations I am inspired by Foucault (1986, 1992, 1997).

  • 3

    The few people declining participation in the study all came from central Umeå and had either practical reasons to decline (one was deaf-mute, another had various psychiatric diagnoses and thought observations would stress her), or simply stated that they wanted the examination to be a personal ‘treat’ and not a contribution to research: ‘I do this for my own sake’, as one woman explained.

  • 4

    All quotes have been translated from Swedish into English by the author.

  • 5

    In response to the commercial element of most large-scale biobank activities, the international sociological literature has similarly begun focusing on fair distribution of potential benefits (Busby and Martin forthcoming, Haddow, Laurie, Cunningham-Burley and Hunter forthcoming, Petersen 2005).

  • 6

    In its emphasis on the co-production of morality and power, the study is closely affiliated with the Durkheimian tradition in the sociological study of bioethics, exemplified in the work of, for example, Anspach (1993), Bosk (1979, 1992), Chambliss (1996) and Zussman (1992). However, this study focuses on policies on ethics (rather than the organisation to which these policies respond) as a form of power, and accordingly seeks to explore the moral shaping of organisational power as well as the organisational conditions for moral problems.

Acknowledgement

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References

This study was supported financially by a grant from the Swedish Ethics in Healthcare Programme (no. 2000/056) and the Danish Social Science Research Council (no. 24-03-0219). I would like to thank Gill Haddow, University of Edinburgh, and my colleagues at the Department of Health Services Research for constructive comments on an earlier version.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Studying power and morality
  5. Identifying policy problems
  6. Trust
  7. Protection
  8. Fairness
  9. Contested ethics or emergent ethics?
  10. Conclusion
  11. Acknowledgement
  12. References
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