Duties and responsibilities of biocitizens: a critical questioning

Trouble with biocitizenship: duties, responsibilities, and identity.
Abstract
Genetic and other biotechnology is starting to impact significantly upon society and on individuals within it. Rose and Novas expound a broadly sketched notion of biocitizenship as a device for articulating a way that the empowered and informed patient, group or network can engage with bioscience, drawing on examples of actors including many patient groups. In this paper, the notion of biocitizenship is critically examined against the background of philosophical justifications of citizenship, as well as drawing on sociological field work that grounds the debate in the views of a large and varied group of concerned actors. Biocitizenship is questioned in relation to possible rights, duties, and responsibilities of citizens, and to the notions of the altruistic citizen, and of equality or inequality in citizenship. Possible ‘duties’ of biocitizens are discussed against the frame of a currently emerging debate about responsibility of citizens in general, and responsibility in relation to health in particular. Alternative views of values and goals, which may undermine any alleged rights and duties, are explored, drawing on interview and other ethnographic data that illustrates the complexity of the terrain. Potential for unequal participation in biocitizenship makes for a regressive notion of citizenship. Problems with identity issues are key: the construction of identity is complex and many groups are explicitly rejecting the ‘biological’ label. Arguably, existing unequal power relationships, exploitation, commodification and ownership patterns are being perpetuated in new ways through the new biosciences. Insofar as the ‘bio’ label applies, we are perhaps more biosubjects than biocitizens. Introduction
Biotechnology, including genetic technology and information, is having a significant
impact upon society and individuals, an impact which looks set to grow. One concept
that has been used to provide a framework for examining this impact is that of
biocitizenship. This in turn raises many questions including those of the rights and
duties of biocitizens: both deserve detailed examination, and this paper concentrates
on examining the alleged duties and responsibilities of biocitizenship in relation to
biotechnology.

There are many examples of alleged emerging ‘duties’ of biocitizens. For instance it
has recently been argued, that ‘Biomedical research is so important that there is a
positive moral obligation to pursue it and to participate in it’. Questions urgently
need to be raised concerning the purported goods of biotechnology towards which
individuals and communities are encouraged to contribute. We need to ask to what
extent are we biocitizens, and to what extent are we merely biosubjects?
Raising these questions requires examining the notion of citizenship; we frame biocitizenship against other contemporary citizenship debates. We also question the ‘bio’ part of ‘biocitizenship’, especially in relation to constructions of identity, both collective and individual. We call into question examples used to illustrate biocitizenship in action, drawing on academic and public debate as well as interview and other ethnographic material from research conducted amongst different groupings of UK ‘publics’ engaging with bioscience, between 2003-2006. This examination gives us reason to consider that in many respects, the notions of a citizen’s duties, responsibilities and calls for altruism in the broad sphere of health and medical science, are being co-opted and distorted in the service of biotechnology. Current citizenship debates
Contemporary accounts of, and debates about, the nature and constituency of ‘citizenship’ are of the zeitgeist in a number of different academic domains. In the sphere of ‘green politics’, theorists like Dobson, Barry and Hayward are amongst those engaging with the concept of citizenship, with the aim of firming up political theory for civil society environmental ‘best practise’ in an age of globalisation. A recent debate in the journal Environmental Politics between Andrew Dobson and Tim Hayward focussed on whether Dobson’s conceptions of ecological citizenship held water as a politically robust theoretical principle; with Hayward contending that Dobson’s concepts informed, rather than replaced, a ‘traditional’ conceptualisation of citizenship. Dobson, for his part, states that the nature of politics, and of a political ‘polity’, ‘membership’ of which infers citizenship, needs to be conceptualised more broadly than the confines of a nation-state: further, ecological citizenship is seen as a practice, not a status. Tellingly for issues of inequality, which we argue are a major problem with biocitizenship, justice is a core principle of ecological citizenship for Dobson. Rights and duties of ecological citizenship are points of debate for both Hayward and Dobson. The existence and nature of rights and duties and even the way the citizenship cake is sliced in terms of ‘membership’ is thus up for grabs not only within disciplines, but between them. Are we to be biocitizens, as Rose and Novas would argue, or ecological ones? Or both? What if the ‘rights’ of certain bio citizens conflict with the ‘rights’ of other ‘bio’, or ‘eco’ citizens, for example over the patenting of indigenous DNA for medicines? Some of us will be born citizens of various types, others of us will have citizenship thrust upon us, it would transpire. It is essential, firstly, that these different conversations link up together. Between them, ‘green’ political theorists like Barry, Hayward and Dobson have developed a conceptualisation of citizenship which, very importantly, focuses on issues of social justice in an age of globalisation, where environmental risks are generally borne by the global poor. The ‘green’ eco literature has a significant contribution to make to the ‘red’ health literature, in terms of the clear links between environmental degradation and pollution, and health; and also because, as Dobson argues in the pages of Environmental Politics, ‘Justice is the virtue currency of ecological citizenship’. This literature has clear links with the environmental social justice–orientated health movements identified by Brown and Zavestoski, who mobilise over health concerns but consistently have accompanying core frames relating to social justice and environmental issues, for example over pollution grievances. In the 2004 special edition on health social movements in the journal Sociology of Health and Illness, the editors, Brown and Zavestoski, give several examples of such social movements, such as women’s health movements mobilising over breast cancer. Many other global examples exist, including locals questioning the ‘coincidence’ of leukaemia clusters at Sellafield, ‘Love canal’, and the mobilisation of Bhopal victims and their supporters. Tellingly, Rose and Novas give as a core example of how citizens understand themselves as biological citizens, similar groups mobilising over Chernobyl. To frame these mobilising actors as ‘biocitizens’ would be to emphasise an aspect of these actors’ identity; Brown and Zavestoski are correct in identifying that health is the core mobilising frame for many of these movements; but in truth the ‘bio’ prefix would mask their accompanying emphasis on social and environmental issues. As we will argue, there are many different types of health groups and patient groups; for some, biological identity will be a core mobilising factor, or issue which they identify with; for others, not. Brown and Zavestoski themselves identify multiple typologies of health and patient groups, which sometimes conflict, and sometimes overlap; the boundaries between identity types are blurred. The question of ‘biocitizens’ and/or ‘ecological citizens’ is crucial as there are important divergences in terms of emphasis, and potential solutions to identified problems, implied by the different prefixes. In terms of (broadly) political science/ sociology/philosophy, ‘red’ (health, medical) and ‘green’ (ecological/environmental) theorists are developing concepts of citizenship in seeming isolation from each other. Worryingly, the rights and duties of any type of citizen are still going to be mostly defined by those with power; and can consist of almost anything. Through invoking a discourse of citizenship, and constructing contemporary meanings of it, Rose, Dobson, et al are all engaging in important work in terms of identifying the need for greater civil society participation in all sorts of life practices, and championing those who do engage. However, the conferring of different types of rights, never mind duties, on civil society which are invoked by concepts of citizenship, is extremely problematic when it comes to the policy definition of what these rights and duties are. In the context of medical health, the focus of this paper, various players in the public domain with specific ideological positions, such as outspoken bioethicists with broadly utilitarian agendas, for instance, and /or those with vested interests, are currently invoking the duties of citizenship; colonising a just-opening out space in terms of global civil society, using a discourse of citizenship to push a certain course of action, before civil society has had a chance to even have a debate. We will ultimately suggest that the urgency of debates around the construction of meaning make Jasanoff’s notion of ‘epistemic citizenship’ a more useful construct for articulating debates about the impact of biotechnology.
Biocitizenship
Rose and Novas use ‘biocitizenship’ broadly, and descriptively, to ‘encompass all those citizenship projects that have linked their conceptions of citizens to beliefs about the biological existence of human beings, as individuals, as families and lineages, as communities, as population and races, and as a species.’ Crucially, ‘not all have equal citizenship in this new biological age’. Rose and Novas refer here specifically to problems with bioprospecting and biopiracy; in this paper we argue that many more examples of troubling inequality need scrutiny. Questions of human value and human worth and biological responsibilities are played out in different ways in relation to biocitizenship. This citizenship is inherently active and Rose and Novas discuss biocitizenship in terms of ethical demands that biological senses of identification and affiliation enable: these include rights, duties, responsibilities, prudence and choice. In fact, they claim, ‘judgments of value concerning certain features of bodies and capacities of citizens have become inescapable’.
Rose and Novas draw on certain key examples of the empowered informed patient-as-consumer (group, network, etc); an engaged, mobilising actor in the bioeconomy and engaging with health issues and bioscience. This is an important social reality. Likewise, Brown and Zavestoski delineate various cross-cutting types of ‘health social movement’, from ‘embodied health movements’ seeking to assert their own ‘embodied expertise’ in relation to their own disease status, to what they term ‘constituency-based health movements’ focusing more on equity and access issues.
Rose and Novas’ examples are used to illustrate how biological categories are forming identities and groupings for activism and for ‘making up’ categories of citizens in relation to the authorities. However, careful examination of Rose and Novas’ use of the term ‘biological’, and the way in which identities of various groupings are formed, leads us to see that the notion of biological citizenship as they construct it is complex and troubled. The notion of the biological here is drawn very widely: so widely, that it obscures salient distinctions and real disputes over goals and values, and hinders our ability to think critically and robustly about the impact on us of biotechnology. As we shall argue, Rose and Novas tend to identify as biological certain membership categories even though the rejection of biology is a salient organising feature for some; and select examples of mobilisation which reinforce biotechnology rather than ones which seek to critique and curtail it. Moreover, they locate the patient groups to which they refer as examples of ‘informational biocitizenship’, involving specific scientific and medical knowledge of one’s condition. However, there is a grave danger that this might overlook real issues and disputes about the veracity and salience of this ‘scientific and medical knowledge’. Mobilising actors: Rose and Novas’s examples of patient groups:
Rose and Novas discuss what they call the ‘proliferation of biosocial communities’. One example of this relates to communities mobilising around the issue of manic depression. It is interesting to note this choice of example, as this particular form of depression is one for which a biological origin is more strongly accepted than is the case with other forms. Their discussion of the Prozac website, for example, talks of how it fosters an active aspect of biological citizenship. Many pharmaceutical companies have strong links with patient groups; websites often contain links to these. But the links are to patient groups that tend to lobby for greater access to drugs and to pharmaceutical based research. The Prozac website does not give links to patient groups mobilising around litigation concerning alleged adverse effects of Prozac or of its alleged overprescription such as Prozac Survivor., Moreover, a recent report by Consumers International criticises drug companies for misleading consumers, and cites the sponsoring of patient groups funding disease awareness campaigns as a new technique in their armoury of marketing strategies., Crucially for questions of identity, many of such patient groups not only consider alternatives to biological accounts of depression. The very disease categories around which identity categories may coalesce themselves come under scrutiny. Rose and Novas themselves cite as one example of how new biological languages are ‘making up citizens’ the woman with pre-menstrual dysphoric disorder. But there are those who consider question the construction of this very disorder; and, it is worth saying, many other disorders, especially psychiatric ones. Such concerns were raised by some of our interviewees: [W]e have good evidence of them inventing symptoms…The one which always comes to mind is female sexual dysfunction … they [pharmaceutical companies] have this way of saying that actually we can cure that. Well, there might be some aspect of that but I’m sure there’s also bigger issues about you know, self esteem and …questions about [women’s] own relationships … how they’re treated – you know, there are so many other issues… And cultural overtones… but in fact we have a whole literature that’s been generated by the pharmaceutical companies and generated … through medical media if you like… saying we now have this thing called female sexual dysfunction and if you’re not having sex and enjoying it well, you need to have our pills that we’re offering you. ‘Mike’, technology campaigner in interview 2004 The persistence of pre-menstrual dysphoric disorder as a category is arguably at least in part due to marketing strategies by Eli Lilly in response to patent law, designed to bypass the ending of the patent on Prozac by re-licensing it for a new application, under the brand name of Sarafem. Is pre menstrual dysphoric disorder then a biological category, or an economic and legal category? To encompass this citizenship behaviour under the banner ‘biological’ is to bypass this complexity, and to miss the many layers of meaning – biological, social, psychological, economic, legal, and so on – that can inform the often contested and shifting identities of various citizenship projects. Likewise, other examples Rose and Novas use tend to be ones where ‘biocitizens’ are mobilising over their own health and bodies, identifying themselves as part of ‘disease communities’ concerned about access, price, quality and availability of treatments and cures, in other words, over increasing access to the fruits of biotechnology. As Brown and Zavestoski highlight, such personal motivations are often -but not always- tied into social and political critiques as regards social equity and access. In these circumstances patient groups can become social movements of a specific type. Rose and Novas refer to groups such as those mobilising around AIDS, aiming to increase assess to drugs, and PXE, concerned with ‘open source’ issues and accelerating research. Similarly, in Seoul Feb 2003, activists occupied Novartis head office in order to protest about the high cost of the anti- sarcoma drug Glivec.
These examples are (at least relative) success stories and the happy marriage of (even occasionally troublesome) patient group and biotechnology corporation helps to bolster claims that the citizenship activities are rightly seen as biological citizenship. However there are many other mobilising actors whose putative ‘biocitizenship’ seems markedly less valid, boundaries can start to blur and conflict when issues of social justice, political economy and environment become more dominant than the discourse of medical and pharmaceutical cures. It is also important to recognise the evolving nature of social movements and their discursive repertoires over time. For instance, the People’s Health Movement focuses almost predominantly on the social, political and economic aspects of health problems and their solutions, strongly attacking globalisation’s role in health crises, and identifying the role of poverty as a killer and threat to health of epidemic proportions. This focus does not deny a role for medical cures but still bases its mobilisation over health on core issues of social and environmental injustice and exploitation. Indeed such discourses also touch policy. WHO and UNESCO have strongly advanced calls for global equity as the basis for global health, and a 2005 WHO report has critiqued genetic hype in relation to third world health outcomes. This example clearly shows the exercising of citizenship via a different route to that of the pro-pharmaco patient citizen. Moving further still from the kinds of examples Rose and Novas focus on, there are also examples of those who actively seek to criticise, oppose or rein in the activities of biotechnology, such as those who consider certain drugs too readily available. This path is often far less successful. For one thing, the odds tend to be stacked against those pursuing legal claims against pharmaceutical companies, especially for class actions. Lately, following failed action relating to Vioxx, fears have been expressed that such litigation can no longer be undertaken in the UK. It looks strongly as if some types of biocitizens have more legitimacy and more airspace than others. Rose and Novas see biological identities as unifying across a class, but it is important to realise that even the patient groups they discuss are not identified only under the ‘biological’ label, or else they would include all people with that biological condition: who joins such groups is a highly complex issue. It is also important to realise that those who don’t join such groups are often unheard. Biocitizenship is a broad term, allegedly, that can encompass opposition. We need to ask of any broad term if it is too broad to do any real definitional work, and if it is actually obscuring debates and issues that need to be heard. Moreover, these groups’ aims of muzzling biotechnology make the label of ‘biocitizenship’ one that encompasses ‘strange bedfellows’, who would often find themselves on quite different sides of the fence with regard to the benefits of biotechnology. This is a crucial point, for in discussing the alleged responsibilities and duties of biocitizens, we must expose and articulate the goals and values that lie behind any such claims. Citizenship, identity issues and ‘bio’ labelling:
Indeed the issue of how people identify themselves in relation to biology is highly vexed. It is crucial to recognise that issues of identity are far more problematic than Rose and Novas allow for in their use of the label ‘biocitizen’; in turn, as we shall see, problems with identity feed into problems with the identification of the putative duties and responsibilities of biocitizens. As this paper will discuss, the construction, maintenance and defence of identity is complex and in relation to biology, problematic. Over-using or over-privileging the ‘bio’ prefix is problematic, since a core criticism of the whole bioscience project from many different directions is the geneticisation and medicalisation of what are arguably social, and often normative, constructs and social issues. Similarly there are good reasons why the ‘bio-labelling’ of identity is reductionist, and possibly even racist, feeding into the dominance of genetic explanations of self, identity and ‘human nature’. Thus actually a lot of ‘biosubjectivities’ critical discourse is on precisely this point: the rejection of the ‘bio’ label in favour of social explanations and solutions. That being said, in many ways genetic ‘information’ is impacting on the identity/cultural sphere as groups and communities respond in various ways to genetic ‘meanings’, embracing or rejecting them or sometimes both at once. In this sense it is important to think about the ‘bio’ in biocitizens, biosubjects and biosubjectivities, in the sense that many people, in many ways, are mobilising over issues relating to biology in one form or another. Choosing the ‘bio’ label as the primary frame for any identity group, however, is problematic in the other issues that it helps to obscure. Moreover we have seen a myriad problems with equality that arise within the biological. Grounding citizenship on our biology, without other considerations or safeguards, is inherently elitist, as there simply is no way of articulating criteria of inclusion that grounds equal citizenship to all. Disability rights provides a clear example of identity fragmentation in this context. Someone diagnosed with a specific syndrome could identify as a member of a patient group wanting cures; or as a member of a disability rights group mobilising over access to treatments and a range of social provision. There is a difference between wanting your condition managed, and wanting it cured. Such an individual could see their syndrome as core to their identity; or could reject the centrality of a biologically informed construction of their own identity. They may feel strongly antagonistic to some of these positions, and/ or ambivalent about some or all of them. They may change their minds over time. The core issue here is to recognise the complexity and ambivalence surrounding any construction of identity; identities are multiple and also fluid. To depict even one individual, much less an entire ‘disease community’ or our entire species as ‘biocitizens’, is to unhelpfully and unnecessarily reify a complex debate. It is because of the fragmented, complex and often contradictory nature of any individual’s identity, much less the difficulties in nailing down the term ‘collective identity’ generally accredited to the nature of a social movement, that definitions of civil society engagement with issues of biology, bodies and identity are so problematic. The notion of collective identity as a constituent part of what it is to be a social movement is currently undergoing a thorough overhaul, and the complex identity politics in the health sphere identified above highlight why the construction of identity is an ongoing problem for social movement theorists.
Identity, biology, and citizenship: a long problematic relationship
We have noted how a broader consideration of mobilising actors in relation to health and biotechnology renders problematical their labelling as biological citizens. This should be no surprise if certain historical debates about citizenship are considered. Rose and Novas’ notion of biological citizenship is formulated against an historical backdrop of various citizenship claims that make some reference to biology; these various claims act to make the question of biology a key frame on which to hang questions of citizenship. But looking at the history of citizenship from a different angle, we might see that one key frame for forming citizenship projects is the rejection of biology, and/or its recognition as highly problematic and potentially divisive. This is most obvious, perhaps, in the citizenship of women. Mary Wollstonecraft famously argued for an extension of citizenship rights to women on the basis of a shared reason with men, and J. S. Mill followed her in sidelining the issue of biology. The liberal feminism that developed from these roots came to recognise that obscuring biology entirely might do women a disservice, and other feminisms have given biology quite a different place. What the history of feminist thought does do though, is forcibly remind us that biology is a contested and problematic notion, not least in relation to issues of equality or inequality of citizens. Insofar as women have been citizens, they have always been biological citizens. Yet this label tells little of the struggles with biology that mark different feminisms’ attempts to grapple with concrete and theoretical issues of inequality. A simple notion of ‘biological citizenship’ is in danger of obscuring many important debates. The ‘altruistic citizen’: issues of responsibility in health and in biocitizenship:
Talk of responsibilities of the biocitizen in relation to developments in biotechnology in particular has to be viewed against the backdrop of current considerations of responsibilities in relation to health care in general. These are present in various forms, from considerations suggested by the UK government about responsibilities to care for oneself in certain ways in order fully to access the health care system, to quite specific and formalised accounts of responsibility as in the Australian Federal Government’s development since 2004 of Shared Responsibility Agreements (SRAs) with various Indigenous communities. The general thrust of these accounts of responsibility, whilst paying some attention to systemic and organisational origins of health problems, such as the recent UK school dinners debate, is to encourage individuals and communities within a larger society to take on greater responsibility for health. Questions about citizenship entitlements and duties are pressing in these debates, and bring to the fore the issues of equality and fairness. This is seen explicitly, for example, in the heated debate about the equity of SRAs with Indigenous Australians. Only some of the responsibilities of citizens, such as responsibilities to obey the law, and in some jurisdictions positive responsibilities such as the duty to vote, are clearly delineated. Others are more loosely articulated, and may not apply to all depending on one’s situation in life. Other ‘responsibilities’ may be optional so long as there are enough volunteers, but may become compulsory in other circumstances, such as national conscription in times of war. In many cases we are encouraged to act but not compelled. In other cases, some might consider entitlements are imperilled or improperly applied to those who ‘opt out’. What is important to consider is how such duties are constructed, and how exactly citizens are exhorted to various responsibilities and acts of altruism. The ‘altruistic’ citizen: duties and responsibilities of the ‘biological citizen’
As stated, a core concern is to enable the debate about what the duties and
responsibilities of the citizen might be, and to examine how an unproblematised
notion of the ‘biological citizen’ might obscure this pressing issue. It is important to
be clear how notions of altruism, duties, and responsibility are linked to an underlying
framework of values and goals. An action can only be a duty, a responsibility, or
altruistic if it is a benefit; but benefits are disputed, and benefits in relation to
medicine and biotechnology are no exception. We also need to consider who is
benefiting, and upon which citizens any associated burdens fall. Indeed, we can ask to what extent we are biocitizens, to what extent are we merely biosubjects? What kinds of duties might the altruistic biocitizen have? Following Rapp, Rose and Novas see new biosocial communities as ‘moral pioneers’ re-imagining those to whom they owe responsibility. But they also make specific claims about this: they state, for instance, ‘The responsibility for the self now implicates both ‘corporeal’ and ‘genetic’ responsibility … now one must also know and manage the implications of one’s own genome.’ It has been argued explicitly that we may even have a ‘moral duty’ to genetically enhance our children., As mentioned earlier, one possible duty is that to take part in biomedical research. This may mean include donating to biobanks, to donating ova and spare embryos left over from IVF treatment, to donating ova ‘altruistically’ simply for research purposes, specifically for so–called ‘therapeutic’ cloning. Feminist and social justice academics and campaigners have been quick to critique the ‘gift’ and ‘duty’ discourse attached to the issue of ‘altruistic’ egg donation for cloning, for example., and to highlight the medical risks to women., But there are many reasons for caution in relation to calls to take part in medical research. A core issue is the risks of these duties. The risks and burdens on individuals are, or should be, taken into account in assigning duties. Also needed is a clear and accurate analysis of how a particular alleged duty is needed to accomplish the goals identified from the framework of values. Often, in discussions of biotechnology, these issues are problematic, as we shall go on to see. Alternative views of values and goals, ends and means, may undermine alleged duties of biocitizens. One important consideration stems from the ‘political economy of research’; the financial and other influences on people’s decisions to offer themselves up as research subjects or as sources of biological material can call into question the notion of informed consent and indeed the notion of altruism: for altruism requires a purity of motive, for public good, which is seriously muddied by the financial interests both of the biotechnology industry and of certain public ‘volunteers’.
There are many other problematic examples of how putative ‘goods’ are presented to putative biocitizens; among these are what we might term ‘crypto-duties’ masquerading as choices. Pregnant women carry a disproportionate social burden here. One could argue that the context of prenatal testing, whilst overtly about choice, contains various pressures towards accepting the embryonic screening tests offered them and aborting or not implanting the ‘defective’ foetus (the whole point of screening for conditions with no cures): if you have the health care system that goes to a private insurance scheme which is the way that generally the health infrastructure is going… the NHS is being privatised by the back door, you know… ‘we’ll only give you this kind of treatment’ and very much within the area of pregnancy…if this test comes up and the test says your child is likely to have this disability and we won’t give you health care, I mean what choice is that for a woman in society is that very individualistic and does not give help ‘Katie’ sustainable development campaigner in interview 2004 There are also duties of biocitizenship that we cannot escape and which actually
highlight that in the bio-sphere we are more bio-subjects than citizens. In the ‘lab
without walls’ we are all subject to unquantifiable (medical and environmental)
risk from bio-experiments such as GM crops, viral vectors, genetically modified
superviruses and nano-particles ).,We all face being subject to increasing
biosurveillance in the name of security, in the form of forensic DNA databanks,
biometric scans for passports, and nanotechnology military applications such as
‘smart dust’.
Concerns about the goals of biotechnology will cast radical doubt upon its legitimacy to set out a vision of altruism for the ‘biological citizen’: there’s no reason why health care should be the most profitable sector of industry, that’s disgusting but it’s true. The pharmaco industry is… looking at the new ways to extent their profits through their innovations, and the fact that it’s led very much by that is a warning sign…It’s a redefinition of what is healthy. And if you have an ongoing redefinition of normal… suddenly we will become unhealthy and with defects, because we have the effects of the extension of what’s being done to disabled people over a long time, in that we all become disabled, and that we all then therefore become a market for improving ourselves. Questioning the goals and values of ‘altruistic’ biocitizenship:
There are many spheres in which the construction of the altruistic biocitizen is questioned. Here we overview these in a few areas: the social realm; the realm of the market; the construction of notions of progress; and the impact on women’s bodies. The social:
We have already seen how social and environmental causes of disease may be overlooked; that is, causes of disease which stem from and perpetuate cultural, social and economic inequalities are neglected, hence further entrenching the inequality of the biocitizen (see below). Critiques based on medicalisation and geneticisation cast doubt upon the rationale and deleterious effects of biotechnology. yes we have a different function because of our bodies but a lot of the reality of what that means and whether we can function in society is about how things are set up around us. Like my life in the last two years has been a hundred percent better because I’ve been in housing which meets my needs and it’s something as simple as being on the ground floor… you know for us to get to where we need to get to, we need society to accept diversity, it can’t rely on us changing. There’s so many things that can’t be changed…they’re spending huge wads of money on things, when they could be fixing the day to day problems of people that have all sorts of conditions by spending that money elsewhere. ‘Sally’ Disability Rights activist in interview 2004 By focusing on constructions of biocitizenship where the dominant construction of health is the medical fix, discourses of duty in relation to medical research take on a certain complexion. But if the debate was set more broadly in relation to citizenship and health, other issues about the construction of health and how we can be healthy arise.
The market:
Secondly, as already indicated by our discussion of the real motivation of ‘altruistic’ behaviour, concerns about the relationship of research to the market cast doubt on who is really being served by advances in biotechnology. The biocitizen-as- consumer fits with the dominant discourse of biotechnology competitiveness in the EU ‘knowledge economy’.What is the real motivation behind those who are setting agendas and values; are we really being asked to do something altruistic or are we serving mammon and fostering dominant cultural values? [T]he reason the [TGN1412] trial was happening in the UK first was probably because the UK establishment, though good by global standards, saw granting swift go/no go trial decisions as important for UK competitiveness in a field in which the UK is perceived as having a comparative advantage… Industry ‘insider’ in personal email, April 25th 2006 The ‘invisible guiding hand of the market’ can in the minds of some, cast doubt on the purity of any putative altruism: I don’t like the idea that by volunteering public-spiritedly…Glaxo-Wellcome could end up owning the patent on my cell line which poor people have to pay for Member of ‘disease community’ in genetics workshop, European Social Forum, London October 2004 ‘Progress’:
These points alert us to a third issue, that notions of ‘progress’ behind research may be questioned. For example, there have been a number of critiques of the notion of human ‘enhancement’.,, It is also noteworthy that early applications of some of this technology are for purposes which are quite clearly cosmetic, commercially motivated and quite clearly, culturally loaded, and with clear gender issues. Recent media reports of the ‘future promise’ of the use of stem cells have included their use for ‘safe’ breast ‘enhancement’ Is it a coincidence that one of first commercial uses of nanotech is for anti ageing face creams (L’Oreal)?, Can ‘duties’ and ‘responsibilities’ to take part in ‘cutting edge’ research (e.g. egg ‘donation’ for stem cells) possibly refer to such end-of-pipe applications and outcomes, the direction of which are dictated by ‘lowest common denominator’ cultural pressures and market flows? Women:
Fourthly, there are many examples which suggest that we are witnessing the commodification of women’s bodies, and the placing of a disproportionate burden of responsibility on women. These cast doubt on notions of equality, and on what is being achieved. In research conducted between 2003-2006 on UK public engagement with medical genetics, one of the core issues for many different groups of publics were the multiple complexities, anxieties and ambiguities around the issue of embryonic screening. In the same time period, several important public policy consultations on this topic have been launched.,, Research data from the ‘Emerging Politics’ project shows clearly, that even when individual members of the public are generally supportive of the genetic testing of embryos (and many are not), they also voice concern and acknowledge deep, and often simultaneously contradictory, and deep complexities, beyond our current remit. But these include the almost universal acknowledgement that these are difficult decisions and that women of childbearing age are on the front line of bearing this ‘burden of choice’. Here we have a clear example of how ‘duties’ accruing to [bio]citizenship are impacting unevenly upon certain sub-sections of the population; the ‘usual suspects’, here, women, elsewhere, others. [H]ow far should you go in telling people information that may just be simply giving them more to worry about? It may be they can do something about it. It may be that they want to prepare themselves. There’s all sorts of reasons why you might want to know. But it’s not an automatic presumption that genetic knowledge is necessarily a good thing. ‘Andrew’, technology campaigner in interview 2005 Closely related to this last point, risks attendant upon putative responsibilities must be taken into account. In illustration, it has recently been suggested in the UK that women be ‘allowed’ to donate ova ‘altruistically’ for medical research, and this practice already occurs elsewhere. There are clear medical risks, such as ovarian hyperstimulation, which present themselves without any corresponding individual benefit. Major biological differences in the ease of gamete donation between the sexes exist and unless this is clearly recognised, there is a danger of unequal burdens being placed on certain, ie, female, biocitizens. This is especially pertinent given that women are already placed at disproportionate medical risk by being excluded from much medical research where women, as individuals or as a class, could benefit, because male biology has been perceived as the norm. Questions of unfair burden and benefit are pressing. Bioinequalities
As Rose and Novas say, ‘not all have equal citizenship in this new biological age’. Indeed, this is a real problem, and it is a real problem too that this ‘new biological age’ is in danger of increasing existing inequalities and inventing new ones As we have already discussed, a certain type of patient group has much ‘discursive legitimacy’ with their core frames of cures, hope and progress. The fact that they mobilise over ‘cures’ acts to support the frames and agendas of the dominant paradigm. In contrast, critical or oppositional biosubjects and biosubjectivities who see themselves as under threat in some way from biotechnology have very little discursive legitimacy in the brave new ‘future promise’ world of cures and enhancement for all. As our discussion will have implied, two groups who stand to have existing inequalities further entrenched are women and disability rights groups. For example, Disability Rights (DR) groups and radical feminists critical of ‘enhancement’ and of the implications of (embryonic) genetic screening and testing are rarely heard voices in the biosciences/ bioethics debates, even when ‘big hitters’ like Habermas are also concerned about ‘market-led eugenics’. Bioscience can be seen as another means through which power relations, and capitalism as a form of power relation gets a market out of the Western rich and ‘the worried well’ at the expense of the poor and marginalised. Membership categories with problematic and unequal relationships to biotechnology are discussed below; recalling the vexed questions of identity which further problematise these issues. If these are indeed ‘biocitizens’, it is not in at all in the same way as patient groups who, for example, benefit from financial support from the pharmaceutical industry. and I’ve seen the presentation saying; ‘ here is your market in the coming fifty years. Well, you’ve got an aging population - baby boomers who are into staying young… and they don’t want to get Alzheimer’s. There’s a wonderful population of people who have money, they’re in the west and that’s what you need to focus on’…which again makes sense financially, of course it makes sense. It’s a very clever strategy but it doesn’t do anything for the poor, it doesn’t do anything for the disabled and makes them even more beyond the pale which is the wrong approach, it’s the medicalised approach rather than a society approach and doesn’t do anything for the most vulnerable in society. Apart from that it will perhaps make them feel even less part of society because they’re even more defective. ‘Mike’ is here concerned that certain, market defined groups will benefit disproportionately from biotechnology developments. There are many reasons to think that ‘the poor’ as a group suffer disproportionate burdens and receive scant benefit from developments in biotechnology. Holding a banner that read ‘Nanotechnology - its not big and its not clever’, a dozen angels… cautioned delegates against the foolish attempt to rush nanotechnology to market: ‘Where these nano fools rush in we angels fear to tread…The same greedy corporations who messed with the genetic basis of life are now seeking to alter and privatise nature right down to the atomic level…’ UK nanotech protest press release Dec 9th 2004 Many of these concerns about inequality and access are taken up by ‘New Chartists’. One concern expressed by such direct action groups is the lack of public engagement in agenda setting, seen in their critiques of the market-led science agenda and ‘the politics of technology’. Other concerns include unquantifiable risk/ uncertainty in the domains of health and the environment, and the notion of ‘enclosures’, exemplified in concerns over ‘biopiracy’ and ‘biocolonialism’. Issues of ownership and commodification of ‘life’ and of ‘the human’, are taken up, together with concerns about [bio] surveillance and control. These ‘New Chartists’ are not an ‘unequal’ citizen group; but they are exercising their citizenship in terms of ‘direct democracy’ and engaging with issues from an altruistic basis of challenging perceived inequality, for example the exploitation and commodification of others, such as the patenting of the DNA of indigenous peoples. They are very unlikely to be given credence as legitimate players in terms of polity /policy and they are certainly not the type of biocitizens that Rose and Novas have in mind at all. In fact as we have argued throughout, the notion of biocitizenship seems set up to exclude the already marginalised views of such participants even further. Conclusions:
Existing unequal power relationships, exploitation, commodification and ownership patterns are being perpetuated in new ways through the new biosciences. The raising of the idea of biocitizenship actually alerts us to the ways in which we are not all equal in relation to biology and to biotechnology, and to all reasons why we are biosubjects enduring biotechnology rather than active citizens staking out a claim on it. The ‘biocitizens’ we have predominantly focused on here often have problems in being heard above the ‘cures and progress’ discourse of the biocitizens upon which Rose and Novas tend to cast their gaze. Those emphasising the social justice and environmental issues tend in contradistinction to these groups to be cast as ‘anti-progress’. Especially given the links of ‘pro-progress’ biocitizens with powerful vested interest, the whole notion of biocitizenship needs careful dissection to avoid inadvertently skewing debates and duties, responsibilities, benefits, burdens and inequalities towards views that less critically embrace the fruits of biotechnological progress and place less emphasis on social problems they may drag in their wake. Keeping a clear attention to conceptions of social justice and environment as factors when considering citizenship in relation to science, health and medicine in an age of globalisation can help redress this imbalance. We should beware the bio-labelling of complex identities. Rather than a blanket biocitizenship, multiple publics are contesting power relations in multiple arenas. Opening up an awareness of these contested relations is necessary to facilitate public debate about creeping duties and responsibilities that place disproportionate burdens and scatter benefits unevenly. The many citizens identified here who are engaging, often passionately, in many different ways with these issues are certainly exercising what several key thinkers in this field have identified as important aspects of global citizenship; what Dryzek has termed ‘discursive turns’. Such ‘discursive turns’ need to be heard sensitively to enable conflicting claims and ambivalences full scope, and the debating stakes set as broadly and openly as possible. Thus, in terms of thinking about public engagement with bioscience, without urgent debate, ‘biocitizenship’ could become a co-opted term. Citizenship, as we said at the start, is now common currency especially for thinking about concepts of ‘global civil society’. However, as we have shown, civil society engagement with bioscience reflects widely different knowledge claims and different stakes on the construction of meaning. If any prefix to citizenship is needed at all then we suggest Jasanoff ‘s concept of ‘epistemic citizenship’ is a better rationale/ fit for these purposes. We take this to mean the exercising of citizenship through the articulation of different knowledge claims, or meanings. One can extrapolate, in this context, differing knowledge claims in relation to health to be the exercising of ‘epistemic citizenship’.
It is time for us, as academics also engaged in constructing meanings, (see also John Law for an account of how research methods are always political) to start taking our own ‘epistemic citizenship’ somewhat more seriously. 1 Nikolas Rose, C. Novas. 2004. Biological Citizenship. In Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. A. Ong, S. Collier, eds. Blackwell: 439-463. 2 John Harris. Scientific Research is a Moral Duty. Journal of Medical Ethics 2005; 31: 242-248 3 Cesagen flagship project ‘The Emerging Politics of Human Genetic Technologies’ 4 A. Dobson. 2003. Citizenship and the Environment. Oxford. Oxford University Press. 5 J. Barry. 1999. Rethinking Green Politics. London. Sage. 6 T. Hayward. 2005. Constitutional Environmental Rights. Oxford. Oxford University Press. 7 Frank Fischer. 2000. Citizens, Experts and the Environment: The Politics of Local Knowledge. Durham, NC and London. Duke University Press. 8 T. Hayward. Ecological Citizenship: Justice, Rights and the Virtue of Resourcefulness. Environmental Politics 2006. 15, 3: 435-446, [And the rejoinder:] A. Dobson. Ecological Citizenship: a Defence. Environmental Politics 2006. 15, 3: 447-451. 10 Or why not cyber citizens, or any other prefix depending on one’s preferred starting point. Why not lose the prefix altogether, and simply focus on the concept of citizenship full stop? 11 ‘Rights’ are why the altruistic citizen feels more impelled to repay a social debt through duties.
Rights can impinge on others in terms of their (normative) construction and their impact , e.g. ‘rights
for cures’ -animal rights- embryo rights- women’s rights. Linked to issues and identity politics like this,
the complex and contested concept of rights can be clearly seen.
12 Dobson 2006. op. cit. note 7: 450.
13 Phil Brown and Stephen Zavestoski, eds. Sociology of Health and Illness 2004. 26, 6.
14 Brown and Zavestoski. Op. cit. note 12: 686.
15 Rose and Novas. Op. cit. note 1: 441.
16 E.g. Harris. Op. cit. note 2.
17 See for exam and
for references to Ian Wilmut, one of the Roslin
Institute’s ‘Dolly’ cloning scientists, now advocating use, and ‘donation’ of human female eggs for
therapeutic cloning purposes.
18 Sheila Jasanoff. 2005a Designs on Nature: Science and Democracy in Europe and the United States.
Princeton University Press.

Sheila Jasanoff. 2005b. Science and Environmental Citizenship.’ Handbook of Global Environmental
Politics. Eds. Peter Dauvergne and Edward Elgar: 365-382.
19 Rose and Novas. Op. cit. note 1: 440.
20 ibid.
21 Rose and Novas. Op. cit. note 1: 440.
22 Brown and Zavestoski. Op. cit. note 12: 685-6.
23 Brown and Zavestoski highlight the problems of categorising in relation to typologies of complex
‘health social movements’, identifying blurred boundaries between ‘ideal types’. Their construction of
messy and multiple loose networks draws heavily from ‘standard’ social movement theory and thus is a
more sensitive analysis of civil society participation. A note of warning in relation to this entire arena,
is that researchers should not rush to define any civil society engagement as a social movement per se;
a mobilising group does not a social movement make. Further, one would have to examine very
thoroughly, given the many differences in patient identity frames and claims identified in this paper,
the notion that there is any such thing as a UK ‘patient social movement’ simply because there are a
plethora of mobilising patient groups.
24 Rose and Novas. Op. cit. note 1: 442.
25 http://www.prozac.com.
26 http://www2.netdoor.com/~bill/prosurv/prosurv.html.
27 Likewise, GlaxoSmithKline (http://www.gsk.com) does not provide links to Paxil Protest or the Seroxat Users Group oth of which are patient groups mobilising to support those adversely affected by GSK’s own version of Prozac, paroxetine. 28 Michael Day. International consumer group slates drug marketing practices. British Medical Journal, 2006. 333: 14, 1 July. 29 Consumers International. Branding the Cure: A Consumer Perspective on Corporate Social Responsibility, Drug Promotion and the Pharmaceutical Industry in Europe. www.consumersinternational.org. 30 Paula Gardner. Distorted Packaging: Marketing Depression as Illness, Drugs as Cure. Journal of Medical Humanities, 2003. 24: 105 – 130. 31 Marcia Angell. 2005. The Truth About Drug Companies: How they deceive us and what to do about it. Random House. New York. 32 Indeed, adding layers of complexity to the formation of such identities, economic decisions by companies like Eli Lilly in relation to drugs like Prozac have been partly fuelled by economic pressure resulting from legal action. Many of these cases have been filed by those who question the wisdom of treating mental distress simply as a biological category. 33 Brown and Zavestoski. Op. cit. note 12: 686. 34 Rose and Novas. Op. cit. note 1: 448, 456. 35 http://glivec.jinbo.net/english.html. 36 People’s Health Movement: . 37 Dobson 2003. op. cit. note 4. 38 WHO. 2005. Genetics, genomics and the patenting of DNA: Review of potential implications for health in developing countries. Available as an online download at 39 Pamela Ferguson. 1996. Drug Injuries and the Pursuit of Compensation. Sweet and Maxwell. London. 40 Clare Dyer. English claims against Vioxx manufacturer on brink of collapse. British Medical Journal, 2005. 331: 1292, 3 December. 41 A. Plows. 2004. Genetics and Society Conference on 'Biocitizenship'. Wales Gene Park, Cardiff University, 13 October, 2004. Available for download at. 42 I. Welsh, R. Evans and A. Plows. 2006 forthcoming. Towards an Anatomy of Public Engagement with Medical Genetics: Strange Bedfellows and Usual Suspects. New Genetics, New Identities P. Glasner and P. Atkinson, eds. Routledge. London 43 A. Plows. 2004eetings of Research Committee 47 of the International Sociological Association (ISA) in conjunction with Centre
d’Analyse et d’Intervention Sociologique (CADIS) at EHESS: Paris, 11-12 June, 2004; A. Plows. 2007
forthcoming. Convergence: Nanobiotechnology and the politics of technology. Jotterand, Fabrice eds.
Nanotechnology: framing the field. Springer.
44 A. Melucci. 1996. Challenging Codes: Collective Action in the Information Age. Cambridge
University Press. Cambridge.
45 Kevin McDonald. From Solidarity to Fluidarity: social movements beyond 'collective identity' - the
case of globalization conflicts. Social Movement Studies 2002. 1, 2: 109 – 128.
46 Plows. Op. cit. 42.
47 Mary Wollstonecraft. 1792. A Vindication of the Rights of Woman. Penguin. Harmondsworth. 1982
48 John Stuart Mill. 1869. The Subjection of Women. Virago. London. 1983.
49 Alison Jaggar. 1983. Feminist Politics and Human Nature. Harvester. Brighton.
50 Prime Minister’s Strategy Unit. 2004. Personal Responsibility and Changing Behaviour: the state of
knowledge and its implications for public policy. Cabinet Office. London.
51 Australian Government. Office of Indigenous Policy Coordination. Shared Responsibility
Agreements and Regional Partnership Agreements. Available at:
52 See e.g. the School Food Trust website,
http://www.schoolfoodtrust.org.uk/?gclid=CIiOl8yS9YUCFUV9EAodCRtPNQ.
53 K. Collard, H. A. D’Antoine, D. G. Eggington, B. R. Henry, C.A. Martin, G. H. Mooney. Mutual’
obligation in Indigenous health: can shared responsibility agreements be truly mutual? Medical Journal
of Australia 2005. 182, 10: 502 – 504.
54 Rose and Novas. Op. cit. note 1: 441.
55 Taken from activist press release October 1st 2004. Disability rights and social justice activists
protested yesterday at the First International conference ‘Ethics, Science and Moral Philosophy of
Assisted Human Reproduction’, d at the Royal
Society London.
56 Julian Savulescu. Procreative Beneficence: Why We Should Select the Best Children. Bioethics
2001. 15: 413-426.
57 Harris. Op. cit. note 2.
58 see for exam HFEA favours altruistic egg donation for cloning
research.
59 .
60 Sarah Sexton. 2005. Transforming ‘Waste’ into ‘Resource’: From Women's Eggs to Economics for
Women. Available online at 61 .
62 Donna Dickenson. Commodification of Human Tissue: Implications for Feminist and
Development Ethics. Developing World Bioethics 2002. 2, 1.
63 So we see how people offer themselves up for pharmaco trials; the ultimate ‘biosubjects’. In
London, March 2006: the now infamous TGN1412 pharmaco trial took place - also see Jesse
Gelsinger who died from ‘routine’ and non-essential gene therapy trial in US. The concept of properly
‘informed consent’ is becoming highly problematic.
64 Bronislaw Szerszynski. 2005. Beating The Unbound: Political Theatre in the Laboratory Without
Walls. In Nigel Stewart, Gabriella Giannachi, eds. Performing Nature: Explorations in Ecology and the
Arts. Frankfurt and New York. Peter Lang.
65 Risks (of certain types), of course, are in many cases being acknowledged from the top down; see for example the Royal Society report on nanotechnology; Royal Society. 2004. Nanoscience and nanotechnologies: opportunities and uncertainties. London. Available online at However, risk management, mitigation or risk identification is not the same as risk removal or a moratorium. 66 S. Mayer. 2002. From genetic modification to nanotechnology: the dangers of ‘sound science. T Gilland ed. Science: can we trust the experts?: 1-15. London. Hodder & Stoughton. 67 Mae-Wan Ho. 2003. Living With the Fluid Genome. Institute of Science and Society. 68 ETC. 2003. The Big Down: Atomtech - Technologies Converging at the Nano-scale. Available online at
69 Sarah Sexton. 1999 Power and Decision-Making
in the Geneticisation of Health. Available online at
.
7071 The main objectives of FP7: Specific programmes. Knowledge is at the heart of the European
Union's Lisbon Strategy to become the ‘most dynamic competitive knowledge-based economy in the
world’. 72 J. Habermas. 2003. The Future of Human Nature. Oxford. Polity Press.
73 Gregor Wolbring. 2006. The unenhanced underclass. In Paul Miller, and James Wilsdon, James, eds.
Better Humans? The politics of human enhancement and life extension. Demos.: 122-128. Available
for free online download 74 Paul Miller, and James Wilsdon. 2006. eds. Better Humans? The politics of human enhancement and
life extension. Demos. Available for free online download at
75 N. Brown, and M. Michael, M. A Sociology of Expectations: Retrospecting Prospects and
Prospecting Retro-spects, Technology Analysis and Strategic Development 2003. 15, 1, 3-18
76 cells turn into breast implants Feb 18th
2005. Some reports focused on medical breast reconstruction after e.g. cancer surgery; the majority of
press reports emphasised the potential for cosmetic breast ‘enhancement’ applications.
77 See also 78 Stephen Wood, Richard Jones and Alison Geldart. 2004. The social and economic challenges of
nanotechnology ESRC report available online at
.
79 .
80 Human Genetics Commission. 2004. Choosing the Future: Genetics and Reproductive decision-
making. See also .
81 Department of Health. March 2006. Responses to the consultation on the Review of the Human Fertilisation and Embryology Act. Available online at 82 The 2005 DOH consultation in fact was a public review of the HFEA act in relation to use of embryos generally and of embryonic screening in particular. See 83 Sexton 2005. Op. cit. note 59. 84 Judy Norsigian. Egg Donation for IVF and Stem Cell Research: Time to Weigh the Risks to Women's Health. Different Takes. No. 33, Spring 2005. http://popdev.hampshire.edu/projects/dt/dt33.php. 85 See e.g. M. B. Blake, M. Ince, C. J. Dean. Inclusion of Women in Cardiac Research: Current Trends and Need for Reassessment. Gender Medicine, 2005. 2: 71-75. 86 See for example Seriously Ill for Me which has recently changed its name to ‘Patients Voice for Medical Advance’. This is not to denigrate these peoples’ genuine hopes of better treatment or possible cures for in many cases their terminal illnesses. 87 Brown and Michael, op. cit. note 75. 88 Habermas. Op. cit. note 72. 89 With sickening monotony, the poor bear a disproportionately large burden and gain a disproportionately small benefit from developments in biotechnology. Channels of supply and demand in the globalised bioeconomy facilitate the entrenchment of wealth disparities. The poor are also unlikely to benefit from high tech cures (WHO op. cit. note 35, Sexton op. cit. note 59). 90 See for example Corporate Watch. 2005. Nanotechnology: What it is and how corporations are using it. Corporate Technologies briefing no.1 avai91 Hence the reference to such activists as ‘New Chartists’ . 92 Plows. Op. cit. 2004a note 40. 93 Brown and Zavatoski. Op. cit. note 12; Dobson. Op. cit. note 4; Barry. Op. cit. note 5; et al. 94 Barry. Op. cit. note 5; Dobson. Op. cit. note 4; Fischer. Op. cit. note 7. 95 J. Dryzek. 2000. Deliberative Democracy and Beyond: Liberals, Critics and Contestants. Oxford. Oxford University Press. 96 Sheila Jasanoff. 2005a. Op. cit. note 18. Sheila Jasanoff. 2005b. Op. cit. note 18. 97 This championing of citizenship stakes in defining knowledge claims is also highly important in the context of the framing of the EU as a ‘knowledge economy’. 98 John Law. 2006. After Method: Mess in Social Science Research. 2nd edition. London. Routledge.

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