Biosociality, biocitizenship and the new regime of hope and despair: interpreting “Portraits of Hope” and the “Mehmet Case”

Abstract

The concepts of biocitizenship and biosociality, in many ways developed as a reaction to the former critique of genetification and fears of a return of eugenics, have gained a stronghold in much of the current debates on the social effects of modern-day genetics. In contrast to claims of a return to eugenics, the literature on biocitizenship highlights the new choice-enhancing possibilities involved in present-day biomedicine, underlining the break with past forms of biopower. In this analysis, hope becomes a life-inducing and vitalizing force, opening new avenues of civic participation and engagement. Most critics of this analysis have attacked the claims to novelty attributed to these concepts, arguing that more traditional forms of biopower remain as important as ever. In contrast, we argue that the biocitizenship literature underestimates the radical nature of this break with the past, ending up with a too narrow and one-sided interpretation of the ramifications of the new discourse of hope. On the basis of two different case stories, the “Portraits of Hope” campaign from California, USA and the “Mehmet Case” from Norway, we indicate an alternative “darker” reading of the new discourse of hope, arguing that its driving force is not so much future possibilities as present despair.

Keywords:

• biopolitics
• somatic individuality
• hope

Introduction

The twin concepts of biosociality and biocitizenship have in recent years dominated academic debates on the transformative role of medical biotechnology. They have become almost commonsensical in the social scientific field, and they have come to constitute the meaning and content of modern-day biopolitics, as marked by a new “molecular politics of life,” a new “somatic individuality” and a rather euphemistic new “economy of hope” (Rose and Novas 2004, Novas 2006, Rose 2007). Although critical voices have been raised (Kerr 2004, Plows and Boddington 2006, Braun 2007, Raman and Tutton 2010), most critics have trained their attacks on the claims to novelty attributed to these concepts, arguing that more traditional forms of biopower remain as important as ever. However, our critique takes a different trajectory. Rather than arguing for the continuation of past forms of biopower, we maintain that the notion of hope involved in the literature on biocitizenship is mainly a projection from earlier periods that does not give due weight to the new reality of a very different logic of hope. As there is both a new sociality and a new mode of being political emerging from this new kind of hope, it becomes necessary to rethink the substance and meaning of the concepts of biosociality and biocitizenship, which in turn also implies a reformulation of the notion of somatic individuality. We shall do so mainly by exploring two different empirical cases: the “Portraits of Hope” from California, USA and the “Mehmet Case” from Norway. But first we shall briefly sketch the current scholarly debate.

Biosociality, biocitizenship and the new somatic individuality

Medical and psychiatric diagnoses have influenced self-perceptions and self-experiences throughout modernity. Revealing hidden secrets and truths about ourselves, they have produced an important dimension of the modern human condition. However, recent developments in human genetics have actualized our somatic constitution in a more direct manner. According to Novas and Rose, developments in the life sciences (in the affluent parts of the world) have led to a change in the very notion of individuality (Novas and Rose 2000, Rose 2007). We have come to understand ourselves more in biological terms, moving from the modern liberal notion of autonomous individuality towards a new conception of somatic individuality, that is to say:

… as beings whose individuality is, in part at least, grounded within our fleshly, corporeal existence, and who experience, articulate, judge and act upon ourselves in part in the language of biomedicine. (Rose 2007, p. 26)

This implies both a radical individualization, because we gain information of our specific, individual constitution in a new way, and a radical (re-)socialization of the body, because it becomes an object of control and discipline in a qualitatively new manner. New duties are ascribed to the individual – not least the duty to act in accordance with the genetic predispositions – but at the same time new possibilities for intervention and change also emerge on the corporeal level (Buchanan et al. 2000).

The critique of genetification from the 1980s and 1990s predicted that the centrality of genetic explanations would result in the isolation of the individual from wider social and political issues because social problems would be reformulated as individual pathologies (Lippman 1992, ten Have 2001). However, several studies have indicated that neither individualization nor segregation has occurred, but rather the unfolding of new types of socialities that cluster around different biomedical traits and illnesses and create new identities and citizenships (Rabinow 1996, Rapp 1999, Novas and Rose 2000, Taussig et al. 2003, Heath et al. 2004, Rose and Novas 2004, Rose 2007, Callon and Rabeharisoa 2008). New collectives, joined together by shared biomedical traits, now appear in the intersections between science, the economy, and civil society. Patients join forces with biotechnological companies and research groups in order to promote research on “their” disease, and they both influence research agendas and enroll themselves actively as research subjects. These new biocollectives do not passively subordinate themselves to the diagnostic and therapeutic authority of science, but actively seize the new possibilities opened up by the life sciences in an empowering manner. They discuss and shape life choices and lifestyles, and they make use of medical and genetic conditions as ramifications that afford new points of departure. According to Rose and Novas, they form a new kind of “biological citizenship,” becoming a force of creative biopolitical democratization, as self-entrepreneurs enacting choices made possible by developments in biomedicine (Rose and Novas 2004). They are portrayed as a “vanguard” (Taussig et al. 2003) or as “moral pioneers” (Rapp 1999), actively producing new biological values in their wake, values that are simultaneously of an ethical and commercial nature (Rose and Novas 2004). Together, investment opportunities, research frontiers and patients' hope for the future constitute a new, emerging “economy of hope,” at the same time a moral economy and an economy in the more traditional sense. The notion of a “somatic individuality” in many ways expresses this willingness and ability to explore and make use of the new possibilities produced by the life sciences. The image is that of an “ethical pioneer” (Rose 2007, p. 146) who bravely but carefully enters unmapped territory. The somatic individual is an active co-creator in the interpretation and the application of biomedical developments.

This analysis, in many ways developed as a reaction to the former critique of genetification and fears of a return of eugenics, has gained a stronghold in much of the current British and American debates on the social effects of modern-day genetics. In contrast to claims of a return to eugenics, the literature on biocitizenship highlights the new choice-enhancing possibilities involved in present-day biomedicine, underlining the break with past forms of biopower. In their analyses, hope becomes a life-inducing and vitalizing force, opening new avenues of civic participation and engagement. However, we argue that this is a too narrow and one-sided interpretation of the ramifications of the hope discourse. The two case stories indicate an alternative “darker” reading of the new discourse of hope, where the driving force is not so much future possibilities as present despair.

“Portraits of Hope”

During the stem cell controversies in the United States, campaign websites appeared where individuals could testify about their (or their close relatives') severe, painful, and crippling diseases. These sites posted several strongly emotional messages, most of them of a very personal nature. The organizers called these postings “Portraits of Hope”1 and “Stories of Hope,”2 and designed them to influence politicians and public opinion before the referendum in California on embryonic stem cell research, Proposition 71, on 2 November 2004.3 In this article, we shall mainly concentrate on the “Portraits of Hope.”

The struggle over Proposition 71 was directly linked to similar battles in other states, as well as on the national level. The issue of stem cell research is also a central part of a larger battlefield, what is often referred to as the “culture war” (Hunter and Wolfe 2006), and this places the Portraits of Hope in a context that is both relatively long-lasting and dominant on political, cultural, and religious levels.

Hope versus despair

The “Portraits of Hope” are dominated by the tragic destinies meted out by harsh diseases. Their presence in the website is overwhelming, permeating almost every single story. The portraits, then, are neither simply examples of utopian thinking in the medical field nor expressions of a light-hearted, optimistic, and wishful orientation towards the future. The background is much darker:

And just like that, the political debate on stem cell research became more than a political argument to me. It became a debate of hope versus despair.4

There is a clear message in the portraits about the meaning and central dimensions of the social concept of hope: it is intimately linked with despair, and cannot be understood apart from it. The stories are not simply about individuals wanting a medical future that is better than the present. Instead, the message is very different: because my medical present is unbearable, the future has to be better. A relation to the future which is defined by medical emergency, therefore, constitutes this discourse of hope:

I am a woman with very severe Emphysema, COPD, and am praying in my lifetime a cure will happen. I would love to see my grandchildren someday. I live in southern California. I am on oxygen most of the time. My life is very limited now. Please find a cure.5

The future and the present

The social investment of hope is not confined to those medical technologies that are closest to medical application. There are indications that the emotional involvement is even deeper and intensifies in relation to the most basic research, which is at the greatest distance from normal, institutionalized healthcare (Good 2007, p. 365). The presentations of suffering individuals in the “Portraits of Hope” are directly linked to the promises of one of the most experimental fields in medical research. Sometimes the vast gap between scientific uncertainty and practical, medical ability is detectable in the concrete stories about individuals and their diseases:

In October 2001 I was diagnosed with a grade three Astrocytoma – a brain cancer with no cause and no known cure … I learned that brain cancer is technically not really cancer. It is, in fact, a disease of stem cells … What we don't understand about the disease far outweighs what we do understand about it. How can any of this change if studying the very root cause of the disease is made illegal?6

The very basic problems faced by medical research on this woman's specific disease, combined with a very short life expectancy, makes any cure in her own lifetime unlikely:

In six months there is a good chance I'll be dead … I fully realize that my time is limited, and any cures discovered from stem cell research will be several years away. My concern is with future generations.7

“Several years” is not long in relation to the research and realization of completely new medical technologies. Nevertheless, six months is very short. The portraits of persons who are not facing imminent death often convey that it is the present sufferings of these individuals living here and now that must be alleviated by medicine – and not only the sufferings of “future generations.”

I am one of many. We want to be able to return to the productive participatory lives we led pre-Parkinson's. We still have much to offer to society, and view the possibility of a resurrected life that stem cell research offers with hope and anticipation. We don't have forever. Help us now.8

The individuals portrayed matter as such. On the whole, they are much more than interchangeable illustrations of typologies of patients that medical science will be able to cure in a future yet to come. Although the medical conditions have been long-lasting, the relatives still wait for a scientific breakthrough to save their child or family member:

She is very stable and awake all day and sleeps at night but is still in what they call a “locked in” state and cannot respond or communicate with us at this time. She had a brainstem injury and I feel stem cell therapy could be the key to her coming out of this condition; most doctors just write them off after this long. It's been 17 yrs this October. We have waited so long and are still waiting.9

The individuals in the portraits express medical desires of healing for their own lives, not only for the lives of the next generation of patients with similar crippling diseases. As one person suffering from AIDS Dementia Complex, bound to a wheelchair, simply and straightforwardly states: “I want to walk and dance again, and so I support stem cells.”10

Far from benefiting from any existing medical treatment based on the uses of stem cells, the individual in the above portrait has been part of a research project: “I became involved in stem cell research through the Florida AIDS Institute, since this field yields hope for AIDS patients as well as spinal cord damage.”

We may say, then, that the logic of hope undermines or overrides the distinction between medical research and treatment as institutional fields and social systems, and that this is logically linked to a similar conflation within the dimension of emotional and social time. The present and future melt together, both cognitively and morally. On the level of social subjectivities, this has some important implications for perspectives on biosociality. According to Novas and Rose, the new biosociality is marked and defined by an empowered individual who takes advantage of all kinds of medical results, treatments, and knowledge to construct life courses, lifestyles, and identities (Novas and Rose 2000). Far from subjugating humans, the new biomedicine seems to provide a vastly enlarged field of possible actions and strategies, not only for individual patients, but also for their children, spouses, families, and others. On the other hand, the Portraits of Hope also indicate that the obverse of this empowerment is a social-psychological orientation towards and dependence upon future scientific breakthroughs – but suffering patients cannot afford to wait for these breakthroughs, which means they have to be realized in the present:

My wife Marge was diagnosed with ALS in July of 2003. Our goal is to keep her alive and strong until stem cells are finally accepted and used to cure this awful disease. We, like many others, don't have time to muddle through the controversy and politics of this research.11

The confessions seem to have a distinct function in relation to medical hopes. It is as if the very destiny of both individuals and large patient groups are tied in a very direct and decisive way to possible research outcomes. The plaintive imploring for the alleviation of pain and suffering that current medicine cannot relieve expresses a need too desperate and essential to be pushed into the future, partly out of sight of current practice, institutional life, and politics. It is urgent that research delivers, if not in the present, then at least in the nearby future, regardless of whatever basic fundamental obstacles there might be: “We go through every day as if a clock is ticking away, waiting in fear, to see what the next phase of this disease will bring” (ibid.).

Novas and Rose argue that biomedicine is an important element in the constitution of a new ethical field that both demands and fosters responsible conduct on behalf of individuals (Novas and Rose 2000, p. 502). This new field is part of a larger, historical narrative about the cultural and political rise of the new, responsible individual, where fundamental ethical and moral dilemmas in society are to a large degree governed by the presumed responsibility of free, individual choice (ibid.). However, in the medical field, the Portraits of Hope indicate that responsibility also means acting as if the most wonderful and basic scientific breakthroughs are imminent. Translating extreme scientific uncertainty into medical certainty seems to be at the very core of at least some of the new life strategies and ethical choices. There are no real qualifications in this statement about the future likelihood of cures based on stem cells: “… until stem cells are finally accepted and used to cure … .” This, at least, should provoke a rethinking of the perspective on the discourse of responsibility, and not least, the meaning of ethical subjectivities.

The potent and the impotent individual

It is an important element in the theoretical discourse on new biosubjectivities that they are not oppressed or curtailed by expanding medical knowledge and institutional apparatuses. Quite the contrary: the main effect is the creation of a very potent individual, capable of action and independent choices. It is a discourse of activity, not passivity, and of relative independence, not dependence. But the following statement indicates that this is not the whole picture:

Ever since I was diagnosed almost 25 years ago, I have worked hard to prevent the symptoms and inevitable fear that accompanies an illness like M.S. from robbing me of the ability to do the everyday things that make living a life both meaningful and possible. But each year I recognize that my “range of motion” grows smaller … The list of things I can do to take care of myself grows smaller each year; if stem cells hold promise to keep the list from vanishing and maybe can even restore some items to it, then basic human compassion should compel those who have the power, to respect life and support the research.12

The capability of action is slowly disappearing, a deterioration that points towards a weak and meager biocitizen, who clings ever more desperately to future gains won through medical research. The story gives the impression that there are fewer and fewer important choices left. Instead, the fate of the individual is bound to the “promise” of stem cells. However, compared to other portraits, this portrait is mild and moderate and emphasizes at least the subjective possibility of being active. The following is more resigned:

Depression is losing your career, no income for 9 months, no insurance for 2 years, a chronic debilitating disease with no cure, and a future in a wheelchair in some god forsaken nursing home, unable to speak, feed oneself and eventually unable to swallow.

Help us find a cure so we are no longer dependent on others and may return to being productive human beings and regain our dignity.13

The progressive development of the disease is painted in darker colors. It suggests a medical future void of human dignity – and there is absolutely nothing that the individual can do about it, except to support research on human stem cells. This portrait, however, is not at the deepest depths of despair. The following one is even more extreme, but far from atypical. That almost unavoidable and dark future in the other two stories is a present reality here:

Our family suffered the most unimaginable devastation when Jason at the age of seven became quadriplegic, six weeks after colliding with another soccer player … Now all that was lost to him … The only thing that has kept him going is the knowledge that there will be a cure through stem cell research. Our only hope is that it will be soon, before he becomes an adult. It is hard to believe that there are people who want to restrict stem cell research when people like Jason are desperately waiting to be cured. Jason wants to live his life again. Please help make that happen. His four sisters also can't wait to see their brother get his life back.14

This is a discourse of “no alternatives.” The story is about disarmed subjectivities, and it expresses helplessness instead of potency. The suffering individuals and their relatives can merely wait for the “only hope,” and in all important respects they are in a state of powerless inaction, while the scientific community acts on their behalf as the only really empowered social element and collective subject. Therefore, it can be argued that the new logic of hope tends to relegate the somatic individuals to the role of spectators, who watch the scientist play out the script and drama of their destinies.

The context of the production of the Portraits of Hope might have also contributed to the dark shades that imbue these portraits. In the midst of a heated ideological debate, the explicit goal of the initiative was to obtain a political result for the furtherance of stem cell research. As a consequence, the need for research is the focus, and not the capabilities of individuals to cope with their disease. However, on a more general level, the biosocial effects of the very strong and very public messages in the Portraits of Hope may not be limited by the conscious intentions of the authors. The statements serve as discursive “vectors” that have a wider impact beyond the context. What is emerging may be labeled a paralyzed somatic individual, stuck in a prison-like situation.

In many cases the paralyzed subject is not more than a very neutral description of the hard, objective realities of the medical condition: “A single bullet from a .22 severed his spinal cord at the chest level, leaving him paralyzed15 completely.”16

However, also in these cases, the effect of the story is not easily contained, especially since the portraits are constitutive of a larger discourse of action/inaction, where medical-scientific action is the only hope. Again, they serve as general “vectors” in the construction of biosubjectivities, thereby also influencing the interpretation of less definite cases. Still, this also seems to have been the intention behind the website. Because no important distinctions were drawn between the different medical cases, the website presented them as having the same basic message about the relation between the suffering individual and stem cell research and cures.

Being research objects

The basic message of the Portraits is that research into stem cell therapy is the only hope. There are no other solutions to the stories about damaged lives and horrible destinies, and so the difference between experiment and treatment becomes practically irrelevant, as the urgent need for the effective healing power of medical research in the present moment is overwhelming and almost heartbreaking. This view may to some degree alter the traditional relations between medical research and research objects, or at least as it has been conceptualized by ethics. Historically, the role of research ethics has been to protect and shield the patients in their role as research objects. This is also clearly stated in the Declaration of Helsinki (World Medical Association 1964). A basic premise underlying the Declaration is the view of the research community as the active part, eagerly enrolling individuals into experiments which may be too risky, uncertain, futile, intervening, objectifying, or debasing.17 Medical ethics must, therefore, voice and represent the basic interests and rights of individuals, both by applying brakes on a far too speedy process and by introducing other dimensions than the purely medical. In sharp contrast, the “Portraits of Hope” regard the enrollment of oneself as an object of research to be far from an act of sacrifice of oneself or of a close relative for the sake of scientific progress. Indeed, it is considered to be directly beneficial for the individual research object, and thus represents the only humane alternative:

Darlene was hurt in 1986 in an auto accident, and has remained in a semi comatose state since that time … but is still in what they call a “locked in” state and cannot respond or communicate with us at this time … I have never felt the need to give up and stem cell therapy could be the answer to growing new neurons in her brain to take over for the damaged ones. I would love to try this on her, by getting her in a research program. When you have a child in this condition, you know the need for research.18

Obviously, the individual in the Portrait has nothing to lose, and there is almost nothing to be destroyed by risky experimentation that has not already been destroyed by the condition itself. In such cases, there is a kind of “rock-bottom ethos,” where practically everything is gone and all interventions will at worst be neutral, and so second thoughts and critical perspectives on possible side effects are marginal. There is no real balance sheet in such circumstances. This situation may establish a specific subjective relation to medical research. Individuals may not only volunteer, but even claim a “right” to be premature research objects because the severity of the disease leaves them with no other hope (Leonard 2009). There is a strong desire to try anything:

I had a car wreck when I was 16 that left me paralyzed from the chest down (c/7 quad). A year after my wreck I met a doctor who could possibly change my life: Dr. Kao. He said there was a surgery I could do in Argentina that would help me to walk again. He used cells from my stomach and sciatic nerves in my legs. I met a couple of people who had had the surgery and were walking. I had the surgery and regained a little more sensation and more function in my hands but my spinal cord was too damaged to walk again. Just the fact that that was possible motivated me to get stronger and be more independent. Even though the first surgery didn't work I still would try anything if it was going to make me better.19

When individuals and patient groups put pressure in order to hasten the research into clinical trials, aiming to short-circuit the slow, careful, step-by-step approach normal to basic research (e.g. conducting animal trials before involving humans), they might undermine the old “responsibility” that the research community bears. In these cases both individuals and patient groups exceed the role of supporters of science and medical research and, through actions that seek to redefine scientific and medical criteria and standards, start to become players themselves. To use a metaphor, we may say that they are no longer satisfied with sitting in the stands, but are trying to enter the field in order to change not only the course of the game, but the very logic of it (Callon and Rabeharisoa 2008).

Science and politics

The Portraits of Hope openly accuses politicians of denying the testifying individuals their much needed medicines or life-saving cures. They point a finger at a whole range of skeptical or conservative politicians and lawmakers, decrying their stance to be deadly in the most literal sense:

To the many people who oppose stem cells research or therapeutic cloning, I request you to look at the faces on this website, or a family member or friend, who is similarly affected. I ask you to think hard about the power you have to sentence these people to a slow death, or provide them with the resources to live a normal life. What's your choice?20

Political decisions command economic resources. Proposition 71 in California was about public money for stem cell research, and the testimonies state very clearly that money – or the right political decision – will undoubtedly lead to wonderful new stem cell cures:

The California Stem Cell Initiative is the financial answer to incurable disease and disability: offering hope to literally millions of families in America and across the world … It will take a bold step to help the estimated one hundred thirty million Americans who suffer “incurable” disease and disability. The California Stem Cell Initiative is that step.21

There are no inherent obstacles or pitfalls of science that could stop the realization of revolutionary cures. Therefore, this is not about science; it is all about politics:

I don't know much about the politics that are holding our lives hostage by preventing a cure through stem cells research.22

The stem cell cures discussed in the individual testimonies are very much non-existent. In a way the testimonies depicted political decision-making as being the main force for creating revolutionary cures and for having a direct impact on diseases. Of course, everybody knows that politicians are not medical researchers, and that political process itself does not lead to new treatments. But there is a deeper message that requires examination: there is a political logic that in some way envelopes the whole medical-scientific field. This seems to have the implication that the political will formation as such becomes a major force within the medical-scientific realm, and that the good and right political intentions will have an important impact on whether revolutionary scientific advancements become possible.

The Portraits thus introduce a new political dimension into research, indicating both a process of de-differentiation between science and politics and a more direct engagement of society in science, from the most basic research to technologies about to enter the sphere of practice and institutionalization. Politics, the public, interest groups, and individuals do not simply “believe” in science and progress, but often invest rather aggressively their desires and needs into scientific development and “remote” research. Facing the enemy of unbearable sufferings, the biocitizens become aggressive promoters of bioscience.

The good and the evil

The telling and presentation of subjective stories translate into juridical-scientific rights: the suffering individual has a quasi-legal right to receive the stem cell cure for his or her painful disease:

Why does it sound so normal and so acceptable for a doctor to announce to a patient that he/she will spend the rest of his/her life in a wheelchair? Acceptance should not mean resignation. It's high time the medical world, our politicians and the society at large stopped accepting the unacceptable and gave patients the right to hope.23

Exactly how these rights should be interpreted is far from clear, but they are obviously comparable to and of the same magnitude as human rights. Therefore, if society does not deliver, the question of responsibility becomes relevant and even urgent:

How about waking up from that great hiking dream knowing you won't be walking because of some self-righteous politician that thinks God will strike him down for approving research with embryonic cells?24

To some degree, very basic scientific activities permeated by utmost uncertainty are transformed into a set of moral obligations that not only invoke the categories of good and evil, but make them the most prominent criteria for judging people, activities, and deeds. As a consequence, a relatively value-neutral field, governed by common scientific challenges, becomes a site for tense, harsh, and even hateful controversies.

The hypersomatic individual

The “Portraits of Hope” indicate that the reflexive interaction with modern biomedicine, whereby citizens extract choice-enhancing potentials (Taussig et al. 2003, p. 62), is just one part of the story. The empowerment and realm of possibilities implied by the notions of flexible eugenics and somatic individuality do not seem to be very present in the conditions of severe disease and imminent death that dominate the testimonies. The new discourse of hope produces a very high level of engagement and tension, but it is fueled more by unbearable suffering than by playful creativity. Hope becomes the thin line that separates urgency from despair.

The “Portraits of Hope” show individuals caught in a somatic reality with a shrinking space for action and coping, and the future is seen as determined by medical diagnostics and prognoses. In this general biosocial condition of being “locked in,” there is an urgent need for emergency exits that manifests itself in a fundamental desire to escape the limitations of scientific uncertainties and rational calculations of risk. The main escape route is constructed by conflating time and institutional fields: the future is swallowed by the present, and the scientific by the political. The morally correct political actions will produce fundamental scientific breakthroughs in the present, and thereby create medical alternatives for the paralyzed biocitizens who otherwise have no alternatives. Sadly, this sociological account is not much of an exaggeration. Of course, it does not contain the whole truth, but the marginalization of these dimensions in the current sociological discourse of the new biosociality and biocitizenship is close to a collective denial.

As a necessary supplement to the somatic individual conceived by Novas and Rose, we propose a hypersomatic individuality that desperately pushes the limits of research (and research ethics).

Rather than being an “ethical pioneer,” the hypersomatic individual is more of an “ethical storm trooper.” All the ambitions and fantasies of biomedical science – spelled out in more or less clear, honest, strategic, or dream-like manners – are not only taken seriously by this hypersomatic individual, but are also transformed into a combination of an action program and a list of quasi-juridical demands for both science and politics. This individual is not limited and contained by biomedicine, but uses it as a springboard from which to jump and extrapolate in all directions. The “hyper” version becomes overenthusiastic and turns science against itself by taking its dream-like aspirations too literally and by demanding the surpassing of science's own ideology. Therefore, the hypersomatic individual is like a volatile concentration of untamed biomedical desires.

Generality

One might consider the testimonies in the “Portraits of Hope” to be marginal phenomena, restricted to a relatively small group of patients who are experiencing severe suffering and their close relatives. We believe this interpretation to be wrong for several related reasons. First, the number of these patients is not few, and, to many more, their medical conditions represent possible futures. Secondly, the “Portraits of Hope” may also be read as a clear expression of a discourse which is very general, although usually more vague. These testimonies are consequently epistemologically privileged. But perhaps most importantly, the “Portraits of Hope” as direct expressions of deep suffering represent privileged voices on a moral level. Therefore, their political impact has been considerable both in California and on a national level in the US, where the question of governmental support of ES cell research has been high on the political agenda for a decade, and has increasingly come to define the central divides in the political landscape (Gottweis 2002, Jasanoff 2005, Hunter and Wolfe 2006). Further, morally privileged voices may create a deep cultural dynamic that spans beyond specific agendas and that has the potential to reconstruct our bodily and medical “worldview.”

To test the generality of our argument, we shall analyze a similar case in a very different political, social, and cultural context: the “Mehmet Case” in Norway. Both Proposition 71 and the Mehmet Case were, in spite of certain differences, about the political and legal regulation of modern biotechnology and biomedicine. In both cases, the main axis was the relation between severe diseases and the promises of the most advanced biomedicine. The levels of engagement and political tension are comparable, and both cases were strategic, partly reshaping their respective political and legal landscapes.

The “Mehmet Case”

In Norway, human biotechnology has for several decades been a highly politicized field, dating back to the Law on Artificial Reproduction in 1987, the very first national legislation on the field in the world. In 1994 the Biotechnology Act was introduced, which has since undergone several amendments. In contrast to Denmark, for instance, the field has not just been prominent in public debate, but has also become highly politicized along party lines.25 The party-political divides on human biotechnology had crystallized already in the 1980s, and have been quite stable since, even though they differ from the traditional right–left axis.26 The combination of religiously grounded opposition and a critique of instrumentalization has created a stable majority against embryo research (including ES cell research) and preimplantation genetic diagnosis (PGD), and in general, a rather restrictive legislation on human biotechnology (Sirnes 1997). This picture was still stable as late as November 2003, when a scheduled revision of the Biotechnology Act of 1994 was debated in Parliament. Although a governmental proposal to explicitly prohibit PGD was not sanctioned,27 a clear majority voted for a further tightening of the existing exception clause.28 However, this was not a major issue in Parliament. A ban on research on fertilized eggs and embryos had been in existence since 1994, and this ban made it in effect impossible to conduct PGD in Norway. Just four months later, the Mehmet story broke.

The “Mehmet Case” concerned the six-year-old boy, Mehmet Yildiz, who was suffering from beta thalassemia major, an inheritable blood disease common in the Mediterranean, but rare in the Nordic countries. One possible, albeit experimental, treatment for this long-term lethal disease involves the transplant of stem cells from siblings. In 2003 Mehmet's parents applied for public funding to undergo this treatment abroad. Specifically, they applied for the combination of in vitro fertilization (IVF), PGD, and embryo human leukocyte antigen (HLA) typing in order to conceive a child who could serve as a donor of cordial stem cells to Mehmet. The combination of IVF and PGD was prohibited by the Norwegian Biotechnology Act. However, the national media picked up on the case, and a major media campaign was launched in the spring of 2004, led by the major private television channel, TV2, and the second-largest tabloid newspaper, Dagbladet. The campaign lasted for several weeks, with daily headlines and sustained intensity, presenting an unprecedented number of front pages, documentaries, pictures, editorials, and invited commentaries for a single issue.

The campaign kicked off early in March with a television documentary on the Yildiz family and their sufferings, which included pictures of Mehmet on the living room floor, counting the money his family had saved for the treatment (Fjeldheim, TV2 Tabloid, 2 March 2004). Dagbladet followed suit the next day with the headline, “Høybråten has given us a death sentence.”29 The article portrayed a palpable sense of urgency:

The little boy has a life-threatening blood disease, and only bone marrow from a brother or sister can help him. But Mehmet has no siblings. […] Doctors cannot say how long Mehmet will live without a new bone marrow. (Holtermann and Dahlsegg, 3 March 2004)

But Mehmet's life was by no means in immediate danger. People live with this disease well into adulthood. The proposed treatment would need to be done before Mehmet reached puberty, but that was still five to seven years into the future. In addition, the treatment itself was still purely experimental, and the success rates were low.30 Even so, the media message was one of urgency; this was a desperate case that did not permit any time for the self-indulgent dwelling upon principles. In addition, confronted with images of the suffering face of a young boy on the front pages, the ethical principles referred to in the recently passed law not only became obsolete and irrelevant, but gained an almost evil quality:

Confronted with … a six-year-old with a life-threatening disease, the principles of the law become meaningless future pessimism. Just some months after it was passed, Mehmet shows that the fear of the parliamentary majority for new medical technology may cost him his life. It is unusual that lawmakers are confronted with such brutal consequences of their politics. (Simonsen 2004a)

And politicians got the message. On the very next day, members of the Progress Party delivered a motion to Parliament to change the law in order to allow Mehmet's mother to undergo the treatment abroad.31 Even for politicians from a relatively trigger-happy party, spending only three days on such a complicated legislative process is a remarkable achievement.

On the same day, Dagbladet published a commentary with the headline “Merciless law.” This commentary worded the dilemma in the following way: “How to formulate an acceptable ‘no’ to parents trying to save their child who is mortally ill by means of an IVF-generated selection of a yet unborn, but with a similar type of tissue, healthy brother or sister as donor?” (Solbakk and Egeland 2004). After having discussed and paid some necessary tribute to general principles concerning instrumentalization, the selection of fetuses, designer babies, and “slippery slopes,” the commentary states: “here we have an example of a state of exception, where the sole purpose is to save an existing life about to be destroyed by illness” (ibid.). With this argument, the authors (a professor of medical ethics and a chief physician) effectively circumvented and marginalized bioethical principles in favor of “lifesaving treatment in exceptional cases” (ibid.). The commentary uses as a positive example the Danish Minister of Health, who in a comparable case pronounced, “let paragraphs be paragraphs,” and asks the Norwegian Minister to follow him because “The ideal of mercy in the Health Service indicates and justifies the same [course of action]” (ibid.).

As a combined consequence of the imagined imminent death of Mehmet and the inherent velocity of the media logic, there was tolerance neither for the time-consuming nature of political processes nor for careful deliberations on complicated and fundamental issues. On 11 March, just eight days after the story was put at the top of the political agenda, Dagbladet lost its patience, and issued a front-page headline that read, “Cynical play with the boy's life,” with the subtitle: “The Socialist Left Party and the Health Directorate postponed the decision again.” On 16 March, there was the front-page headline: “Give the boy a chance,” accompanied by a picture of Alexander from Cyprus, who was conceived after PGD to ensure he did not have thalassemia. In the follow-up article, the reporter states:

Alexander from Cyprus has something Mehmet does not have: A mother who was guaranteed that the child she would give birth to would not be struck by the lethal disease of thalassemia. (Ellingsen, 16 March 2004)

And the campaign had immediate political effects. The following day the Socialist Left Party changed its position, and thereby created a parliamentary majority for an exceptions clause that would permit the treatment. Celebrating the victory, the political editor of Dagbladet showed much sympathy for the difficult time the newly won allies must have endured:

For the Socialist Left Party this emotional case has been tough both politically and internally to the party. When Kristin Halvorsen32 makes it possible to establish an independent ethical committee for deciding on applications for dispensations from the law, it is a compromise which she has doubted herself into as a result of long-lasting33 pressure. Her arguments indicate that she has listened to experts who have the opinion that the strict wording of the law prevents us from using medical technology in the best interests of humanity. (Simonsen 2004b)

However, the adversaries who still had not changed their minds became the objects of malicious pleasure:

The turnaround by the Socialist Left Party means a bitter defeat for the new party leader34 in a case of high priority and one very near his heart … it is a matter of political prestige for the government. Even Kjell Magne Bondevik,35 the sly fox, will have problems handling this case without incurring any wounds. (ibid.)

In a rather triumphal way, the editor indulged in counting the notable fallen bodies of the defeated enemy and in describing in detail their condition. Then, on 19 March, in one of the most unforgettable moments of Norwegian campaign journalism, Dagbladet topped it all with a touching story of Mehmet's struggle. Under the headline “Chained to Life,” one could read the following:

While politicians move freely between debate programs and committee meetings, Mehmet was chained to the blood-transfusion stand for six hours yesterday. They were long hours for an active boy. (Moen, 19 March 2004)

In May 2004 the motion from the Progress Party resulted in a majority decision in Parliament. A new temporary exception clause was mandated that allowed for the public financing of PGD in combination with HLA abroad on a case-by-case basis. The authority to decide was delegated to a special Dispensation Board dominated by medical expertise.

What had happened in these few months? There was no election in between. The same representatives who voted against the bill in November 2003 now supported an unprecedented easing of the law.36 The difference was not one did not know in 2003. A discussion of an almost identical case in the US, the Adam Nash case,37 was debated in the preparatory work to the 2003 Act. In a statement from 2001, a unanimous Biotechnology Advisory Board stated that it “… distances itself from the kind of fetal diagnostics actualized in the case of Adam Nash, since it to a large degree involves using the fetus and the future born child as a means” (Biotechnology Advisory Board 2001, p. 17).38 However, while the Nash case was principled, Mehmet was personal. The difference was that in 2003, there were no concrete others to relate to. It was possible to erect an ethical stone crossing, because no one was left behind at the other side.

The chances of healing or of any medical success in the case of Mehmet were quite slim. But the dramatic pictures of the young boy's suffering face on the front pages obscured the distinction between established medical treatment and highly experimental procedures, and possible future medical breakthroughs became tantamount to current, institutionalized practices. The hope for healing the boy was too desperate to emphasize the difference. Further, the temporal dimension was also contracted on the personal level, and the years until Mehmet would enter puberty were squeezed into a single moment of immediate urgency. Everything was a big “now,” where even a few days' postponement became “cynical play.” Additional time for political processes was a waste of precious time. The differentiation between social fields and systems partly broke down. The pressure of the question of political authority was overwhelming: who would dare deny him treatment? It became an almost direct responsibility of Norwegian politicians to heal Mehmet, as if the actual medical and scientific problems were issues of a second order.

Creating and selecting a new baby by reproductive techniques for the sake of supplying a donor for another individual was a dramatic break with one of the most basic principles of Norwegian bioethical regulation: not to treat an individual as a means. However, Mehmet's sufferings summoned the authority to declare a state of exception: no principle, no matter how sound, should be able to stop the use of techniques necessary for healing. Although the principles as such were acknowledged, they simply did not apply to this particular situation, defined by medical urgency. Any attempts to put forth principled arguments and to seek some distance from the immediate case in question became morally dubious, as attempts to “seek refuge” in or to “hide behind” principles. Mehmet, or rather the media presentation of him, became a political dictator in a literal sense: dictating to politicians how to decide. In order to uphold hope, principles had to be sacrificed.39

In the spring of 2005, another motion was put to government for no less than a total re-evaluation of the law as such.40 Following the election in September 2005, the new Labor-led coalition government replaced the temporary upheaval with a new law, passed in Parliament in 2007 (Ot.prp. 26 (2006–2007)). In addition to permanently formalizing the exception clause for PGD and HLA, the law also broadened the scope of change by allowing research on embryos, especially embryonic stem cell research. Thus the Mehmet case altered much of the regulatory landscape of human biotechnology in Norway. On the political and discursive level, the Mehmet case had a profound impact, and it effectively established a new line of demarcation in Norwegian biopolitics. The former, rather long-lasting main divide had been between technology optimists and skeptics, the latter including radicals as well as conservatives, religious as well as secular. The new dominant divide, however, was simply between Christian and secular orientations. Consequently, the arrival of the exceptional logic of hope conflated the skeptical stance in the field of human biotechnology into a question of accepting the absolute and very substantial principles of religious perspectives, or, to embrace the irrational in opposition to the rational.41

The social concept of truth

A main difference between simple or industrial modernity and reflexive modernity, as diagnosed by Beck (Beck 1986, 1993, Beck et al. 1994, Beck and Bonβ 2001), concerns the position and function of scientific truth in society. In simple modernity, the concept of “absolute truth and certainty” was an ideological tool for external and strategic use, in order to build and secure the social authority of science. In reflexive modernity, however, the relaxed, temporary, and relative concept of “truth,” which regulates science internally, turns outwards and become the dominant social view (Beck 1986, p. 163f).

All the same, the cases above indicate that the popular position of “absolute truth and certainty” has not vanished. In many ways the concept thrives more than ever, but it is very doubtful whether it is able to represent any firm conviction or deep belief in the progress of science any more. The notion of progress has become far too fragile. The new “absolute” may better be understood as an “absolutism,” a reaction against the all-too-visible shortcomings and relative nature of scientific truths. In many ways it is a forced belief born out of desperate needs and a general sense of urgency – and basic threats to this social-scientific worldview may provoke its reinforcement instead of its dismantling. Seen in this context, the new “absolutist truth” is a post-reflexive, or rather anti-reflexive, social concept. Rather than a broadening of the social capacity for reflecting on the conditions of the research processes and the limits of the scientific endeavor – which is constitutive of reflexive modernity – this absolutist truth fuels the hubris of science.

Throughout modernity, the science–society interface has been characterized by a core of non-intervention in the criteria that direct the scientific enterprise itself. As a “pure” quest for knowledge and truth, science had to be protected from worldly interference, be it from love, money or power. In order to fulfill its social function, that is, to pursue the distinction between truth and falsehood, science was dependent upon a high degree of autonomy, guaranteed by a generalized trust throughout society that science will progress, and that its results will be beneficial to society (Luhmann 1973, Barber 1987). However, the new “absolutism” does not guarantee science the condition of being left undisturbed as the old general authority did. On the contrary, the ideological picture of “absolutist truth” is turned against science and scientists, making them hostages of their own historical invention. The sense of urgency in many ways necessitates interventionist practices, and makes science and the research processes both too important and too fragile to be left alone. In this way, the very logic of social differentiation is to some degree undermined.

The new role of the expert/lay divide

In the normative debates on “science in society,” a general view has been that one of the positive effects of lay discourses has been to rein in the somewhat overenthusiastic disciplinary researchers and aggressive promoters of new technologies. They can remind the specialists – as well as the politicians – of social, cultural, and even natural complexities and uncertainties, as well as warning against possible adverse side effects. Lay people have also represented a broader normative framework and set of criteria that counterbalance the narrow goals of technological or scientific progress (Joss 1998, O'Neill 2002, Elam and Bertilsson 2003, Wynne 2006, EU Expert Group 2007, Stompka 2007).

Nonetheless, individuals suffering from severe diseases and exaggerated public promises of finding new cures fuel each other to the degree that talking about an “engaged” individual, or lay involvement, is an understatement. Our case stories indicate that the mixture of pain and the new logic of hope are very strong and potent, and call for excesses rather than the balancing of knowledge systems. Instead of broadening the ethical concerns, “common sense” seems to be driven by despair or heated emotional investment, which urges us to ignore or even repudiate many of them. The imaginative power of lay people is mobilized not to discover possible side effects, but instead to transform the exaggerated dreams of scientists into almost established realities.

The new configuration of “absolutist truth” and aggressive lay intervention is paradoxical in relation to many contemporary diagnoses of “science in society” (Gibbons et al. 1994, Novotny et al. 2001, EU Expert group 2007). But it is none the less a central element in the new discourse and practice of hope,42 which the aftermath of the Mehmet case clearly indicates.

Mehmet revisited

One and a half years after the Mehmet case changed the Norwegian biopolitical landscape, a somewhat tragic and desperate epilogue took place. In January 2005 the Dispensation Board allowed the Yildiz family to travel to the US (Chicago) for the requested treatment.43 Mehmet's mother became pregnant, but in September 2005 she aborted in the 22nd week of pregnancy, and the fetus died. Mehmet had lost his potential life-saving donor. This could have been the sad, but private end of the story. However, once again the case was politicized. In an interview with Mehmet's father, Dagbladet told the story of how he had intervened in the medical procedures of Rikshospitalet, which took care of his pregnant wife. Even though the fetus died, he tried to do something to save some of the valuable stem cells for his son. He contacted a professor at another hospital, the Karolinska University Hospital in Stockholm, who “… several times tried to persuade Rikshospitalet to extract stem cells or to send over skin cells from the dead fetus.44 Eventually Rikshospitalet changed their minds, but the stem cells they tried to extract constituted only 1/1000 of the amount needed to save Mehmet” (Dagbladet, 16 September 2005). Rikshospitalet did not express any regrets, because they “considered the probability of success to have been very small, and, unfortunately, it turned out that we did not succeed” (ibid., chief physician). Although the statement had come from the best hospital in Norway, the medical expert opinion did not impress the politicians. John Alvheim, head of the Parliamentary Social Committee, stated: “I demand full investigation. I react with sorrow and strong anger. I wonder whether Rikshospitalet could not cooperate better with the Karolinska Hospital” (ibid.). This quotation is a demonstration of the new discourse of hope: desperate needs push medical treatments into the unknown, but they are still expected to deliver hard results. Systemic differentiations – the lay/expert and science/politics distinctions – partly collapse. The “absolutist truth” produces a specific effect: if experimental treatments fail, it is because of neglect and not because of fundamental medical uncertainty or basic scientific obstacles. Therefore, political forces are mobilized by intense emotional investments, and a link is established between urgent medical hopes and juridical responsibilities.

Ten days later, the critique was repeated in a commentary written by a medical doctor and professor in medical ethics.45 However, there was a specific twist in the argument. The author highlighted the experimental nature of the medical procedures: “… today there is no experience in using stem cells from the dead to treat children” (Solbakk 2005). Also, the cultivation of stem cells in order to gather enough of them to treat Mehmet was recognized as an “… untested medical treatment” (ibid.). But this was no excuse for the neglect and passivity of Rikshospitalet. Instead, the deep medical uncertainty was presented as a mixture of a scientific challenge and juridical obligation to the hospital:

Why did the scientific staff at Rikshospitalet not take this opportunity to see if such a cultivation was possible to accomplish in practice? Such research is today authorized in the Transplantation Law, and undoubtedly, it is important if we are to get any further in the use of stem cells from dead fetuses in concrete treatment of patients. (ibid.)

There is a zone of non-distinction that encompasses both medical treatment and research, but it does not diminish the urgency for medical action in the present that could save lives now.

Political strategies

There is a tendency to reduce the force of hope to a level of pure rhetoric, as a strategic resource utilized by researchers, patients' organizations, and other interest groups in order to gain support. The concepts of “hype” and “overselling” express that the prospects of cures are exaggerated in order to set a political agenda or to mobilize money for research, not least due to the increasing demands for the commercialization of research results. To some degree both cases may lend themselves to such an interpretation.

In the Mehmet case, the family and especially the father of Mehmet were very active, contacting medical doctors and institutions both in Norway and abroad and displaying great skills and energy utilizing and handling media. At the same time, important groups of medical researchers had been waiting for a long time for the “right” case to use as a strategic device against the Norwegian legislation and regime in the biopolitical field. However, of equal importance was the growing political contradiction between the Christian-led coalition government and some central editors in Norwegian media, the latter being increasingly eager to unveil hidden Christian, fundamentalist ideologies behind governmental initiatives and policies. In short, there was a web of interests and strategic actors, both using and serving each other, but maybe most importantly, mutually reinforcing their political effects.

In the “Portraits of Hope” case the strategic element of media may not have had as clear a presence as in the “Mehmet Case”. Although the organizers of the website were crucial, both taking the initiative and defining its purpose, nature and scope, the very media process was less centralized and more democratic, owing to the structure of new, electronic media. But no less than in Norway, the Californian case was surrounded by strong and mighty interest groups, ranging from patient organizations, via medical researchers wanting to mobilize public money for the research on human embryonic stem cells to ideologists trying to establish a research-friendly “pro-living” discourse to outweigh the existing Christian “pro-life.”

However, we believe that the increased importance of the new combination of hope and despair reflects a more fundamental shift in science–society relations, a shift that has far deeper structural implications than the purely strategic and deliberate levels of pressure and political play. It is a general framing of science which presents itself as natural, obvious, and to some degree inevitable. Although the new discourse of hope and despair does not produce concrete bodily pain, it is able to redefine the relation between human suffering and the most fundamental, uncertain and basic medical research. It not only redirects, strengthens and intensifies social and political interests in the biomedical field. We might even say that these observable interests – and thereby the collective actors and political processes they constitute – to some degree are produced by the new discourse of hope and despair. It also redefines the relation between science and political action, and thereby which political initiatives and interventions in relation to science are understood as meaningful, necessary and legitimate.

Concluding remarks

There is a special dynamic within the discourse of hope. A decade ago xenotransplantation, whereby genetically manipulated pigs would be donors, was seen as the great solution to the global organ shortage, and gene therapy represented the most potent, curative medicine of the near future. However, as both fields ran into fundamental scientific difficulties, the public focus shifted to another field with even greater promises: stem cell therapy, where influential and serious predictions tell us that cures will be found for nearly every disease, at least in the developed world (National Academy of Sciences 2002).46 This is not a new observation. But there are several different interpretations of the social and political dynamic of hope. Brown (2003) describes it as exaggerated expectations that typically attend new medical technologies, and these eventually cool down and diminish as the technologies mature. Early hopes for a panacea are public “teething troubles” that many new technologies have to go through.

We see this as a too narrow interpretation. The focus on single technologies and their public careers makes it difficult to grasp the fundamental and more general biopolitical developments and dimensions involved. We have to take a step back. There is an obvious continuity of exaggerated – sometimes wildly exaggerated – expectations. They do not depend upon or cling to single technologies or medical methodologies, but rather consume them as firewood in an ongoing, heated discourse. The discourse of hope is always ready to move on and leave behind the charred remains. There is no time for dwelling on the disappointments over unfulfilled miraculous scientific events. It is the nature, mechanics, and effects of this process that we have to understand.

It is in this context that we have introduced the notion of “absolutist truth.” An important effect of this new social concept of truth is the ability of hope to immunize itself against critique. In contrast to the “absolute truth and certainty” of modernity, it does not represent a stage of pre-opening, or pre-reflection, but a rather forced closing of obvious possibilities of historical comparisons and learning. Therefore, the new hope is full of forgetfulness. History, even the most recent, is effectively done away with, as though it has disappeared into a black hole. Because the current medical and scientific promise is always exceptional, critical reflections on historical situations, developments, and processes become irrelevant. It is experienced as something so unique that historical lessons are not very meaningful.

Under the post-war regime of science–society relations, the future was in a sense unproblematic; it could be left to the workings of the internal scientific logic and values. However, in the last decades, the notion of a crisis in trust has come to characterize the science–society interface. The solution has often been to include lay perspectives in the evaluation of technical-scientific developments, in order to open science and technology to a broader array of cultural and ethical dimensions. The systematic blindspots of science should be corrected through exposure to social concerns. However, this was the discourse of reflexive modernity. What we propose here is the actuality of a third stage. This stage is characterized by a new problematic: the problem is no longer the insulation of science from broader social concerns, but rather a new kind of “overexposure.” The new regime of hope and despair implies a relatively direct and specific investment in the future of science and research on behalf of individuals, interest groups, politicians, and the media, in short, most levels of society. This constitutes the realm of biosociality, inhabited by a new hypersomatic individuality, whose relation to the biomedical future is characterized neither by a general belief in progress that produces calmness nor by a critical attitude of counterbalancing the systematic blindness of science. On the contrary, the hypersomatic individual is driven by a sovereignty of suffering (Brekke and Sirnes 2010), which demands scientific breakthroughs almost immediately. Science, therefore, is more or less forced into a position of representing the “absolutist truth” and of doing away with fundamental scientific obstacles and uncertainties.

In much of the literature on biosociality and biocitizenship, the coupling of “hope” and “vitality” attributes a special quality to the individual, where hope becomes a life force and something that brings vitality to the individual. But the hypersomatic individual is also characterized by a general loss of subjectivity. To a large degree this individual is defined by the objective medical diagnosis and is forced to face the diminishing possibilities of breaking out of the strict limitations set by the severe condition. The hypersomatic individual is in a state of being “locked in” with almost no personal space for coping and acting. This individual cannot do much with his or her own life, including a re-evaluation of the total situation, which is necessarily and objectively painted in dark colors. Therefore, in many ways the hypersomatic individual is powerless on the personal level and in relation to his or her own life.47

However, this locking-in is compensated for by an ascription of an almost supernatural potency to the most advanced biomedicine, where the distinctions between future medical possibilities, dream-like medical utopias, and institutionalized, medical practices are blurred and even erased. They are all supposed to cure individual patients living now, creating a conflation of the time dimension. If they are not obstructed by politics, scientific breakthroughs are seen as not only possible, but almost inevitable. Therefore, the sense of medical and somatic urgency is linked to an aggressive politicizing of biomedicine. This process is not necessarily controlled by science. On the contrary, biomedicine is often held hostage to excessive expectations and is to some degree subject to a new kind of intervention and social authority.

The hypersomatic individual is defined by a specific duality between the passive and the active. These elements not only coexist, but drive each other to the extreme. Therefore, we might diagnose the condition as a duality between the hyper-passive and the hyper-active. The diseased body, silently waiting in almost total passivity for the medical destiny to unfold itself, produces a very active and outspoken political individual. The contrast between the two faces of the discourse is astonishing. While almost nothing is possible on the personal level, even the smallest coping, almost everything seems possible within biomedicine, even the most miraculous breakthroughs in basic research within a short time. While limitations are next to absolute in the somatic life, they are almost non-existent within biomedical research. Logically, this creates the basis of a new kind of science-politics, which we might call “hyper-politics.” However, relating this to any kind of citizenship, not least the notion of “biocitizenship,” is problematic.

“Biocitizenship” is by no means a neutral concept. It intervenes in the world normatively, and injects meaning into the phenomena through connotations. “Citizenship” is linked to concepts such as “responsibility,” “democracy,” “autonomy,” “rights,” and “civilization.” However, the perceived urgency and necessity of finding new cures for harsh diseases make debates not only obsolete, but almost immoral, a worse-than-useless activity that consumes valuable energy, draws attention away from what is important, and potentially delays the timetable and progress of research. The result is the loss of a critical, normatively oriented political space. There is a call for immediate action, and not for words and deliberations. In this context, the hypersomatic individual is engaged more as a soldier than as a biocitizen.

Acknowledgements

This work is part of the research project “From trust to hope – the interface between science and society in late modernity,” financed by a research grant from the Research Council of Norway's research program on ethical, legal, and social aspects of modern biotechnology. We also want to thank Silje Sivertsen for providing material on the Californian debate.

Notes

The “Portraits of Hope” website was organized by the Stem Cell Action Network, a network of different community and patient organizations campaigning for ES cell research on the federal and state level. The postings were hosted at the address www.stemcellaction.org/portraits.htm [Accessed 10 August 2005]. However, this website has since been removed, and the postings are no longer available.

The “Stories of Hope” website was organized by the Alliance for Stem Cell Research, a coalition of patient groups, scientists, medical hospitals, elected officials, business organizations and others in support of Proposition 71. This website is archived in the UCLA Online Campaign Literature Collection available from: http://digital.library.ucla.edu/websites/2004_996_027/hope.php.htm [Accessed 10 March 2010].

The referendum concerned whether public funding of embryonic stem cell research should be legal or not. This was the text presented to the voters: “Should the ‘Californian Institute of Regenerative Medicine’ be established to regulate and fund stem cell research with the constitutional right to conduct such research and with an oversight committee?” The result: 59.1% Yes and 40.9% No.

Portrait of Hope. Peggy Prichard Ross.

Portrait of Hope. Lindy Armour.

Portrait of Hope. Peggy Prichard Ross.

Ibid.

Portrait of Hope. Carole S. Hercun.

Portrait of Hope. Darlene Fowler. Sherry Fowler, mother of Darlene.

Portrait of Hope. Charles Kipling Issac.

Portrait of Hope. Marge Faulisi.

Portrait of Hope. Idelle Datlof. In most respects she presents a story which is moderate compared to the majority of the portraits.

Portrait of Hope. Sandra Gordon Chackman.

Portrait of Hope. Jason Armitage.

Obviously, the word “paralyzed” has a more concrete meaning than the discursively oriented concept above.

Portrait of Hope. Introducing Jordan Maklari.

The potential harm is not a result of some sort of evil intent, but mainly a side effect due to researchers' attention being directed towards the scientific logic in a strict and narrow sense.

Portrait of Hope. Darlene Fowler.

Portrait of Hope. Jesa Lopez.

Portrait of Hope. Leonard Ke.

Stories of Hope. Roman Reed.

Portrait of Hope. Kevin and Elise Harris.

Portrait of Hope. Corinne Jeanmaire.

Portrait of Hope. Robert Lee.

In Denmark the questions were from the outset framed very much in ethical terms. Whereas in Norway legislative measures were in place already in the mid-1980s, in Denmark the political response was to establish an Ethics Council to elaborate the issues further. No comprehensive legislation existed until 1997, when the Act on Artificial Reproduction was introduced (cf. also Brekke 2004).

The two sides of the party political axis have been represented by the Center Party, the Liberal Party, and the Christian Democrats, together with the Socialist Left Party on the restrictive side, and the ultra right-wing Progress Party and the social-democratic Labor Party on the permissive side. The Conservative Party has on these issues held a middle ground.

The wording of the proposal was as follows: “Genetic examination of a fertilized egg, including examinations for selecting gender (preimplantation diagnostics) is prohibited” (Ot.prp. 64 (2002–2003)).

From allowing PGD in “… special circumstances of serious inheritable disease without any possible treatment” (the 1994 Biotechnology Act), to “…of serious inheritable gender-specific disease without any possible treatment” (Biotechnology Act of 5 December 2003, No. 100 §2-14). The reason for upholding an exception clause, but limiting it to gender-specific diseases was that an alternative method for diagnosing sperm cells before fertilization had not yet been developed past the experimental stage. The exception was meant, therefore, to be for a limited period, and the parliamentary majority asked the Minister to come back with a proposal for a ban once alternative possibilities for treatment were available (Innst. O. 16 (2003–2004)).

Referring to the then Minister of Health, Dagfinn Høybråten.

The clinical success rate of a PGD/HLA procedure is low. Although 90% of the embryos get a correct HLA diagnosis, the ongoing pregnancy rate per cycle is only 10% owing to the genetic selection and the reproductive age of the mother (van de Velde et al. 2006, p. 280). The transplantation of stem cells from matched related donors offers between 80% and 87% probability of cure in thalassemia patients under the age of 17. In adult thalassemia patients, the success rates are far lower owing to their more advanced stage of disease (Lucarelli and Gayer 2008).

The Progress Party's proposal for a new paragraph 2-14 was as follows: “Genetic examination of a fertilized egg before entry into the uterus, including examination to select gender (preimplantation diagnostics) should only be allowed in special circumstances of serious inheritable gender-specific disease without any possible treatment or any other life-threatening disease where full-tissue compatibility is needed” (changes from the 2003 Law in italics) (Dokument 8: 41 (2003–2004)).

Leader of the Socialist Left Party.

In this case, around two weeks.

Referring to the Health Minister Dagfinn Høybråten, who had recently been elected leader of the Christian Democratic Party.

The Prime Minister and former leader of the Christian Democratic Party.

This was unprecedented both in the sense that it was a breach with the regulatory approach that had been dominant in Norway since the 1980s and in the sense that the procedure was still impermissible in most European countries in 2004. Mehmet's parents had previously applied for treatment in Sweden, but had been turned down.

The case of Adam Nash, from the autumn of 2000, involved a US couple who were both carriers of Fanconianemia, a recessive, inheritable, and often lethal disease. The couple had a six-year-old daughter, Molly, who already suffered from the disease. When the couple decided to have another child, they used IVF and PGD in order to make sure that the child would not get the disease. At the same time they used PGD to investigate whether the child would be a compatible stem cell donor to Molly.

The Biotechnology Advisory Board is the principal advisory body to the Norwegian government on matters concerning bio- and gene technology.

Arguments against allowing the procedure because of the slim probability of success did not carry much weight either, given that what was on offer was not a cure, but rather the hope of a cure. Arguing that the likelihood was low did nothing to erase the hope.

Again the initiative came from the Progress Party. Their motion was however supported by all parties except the Christian Democrats and the Conservative Party (Dokument 8: 64 (2004–2005)).

This was most clearly illustrated by the changed position of the Socialist Left Party. Instead of remaining skeptical on the basis of a radical critique of instrumentalism, they joined the new secular fraction.

Moreira and Palladino (2005) argue that scientific debates are permeated by two regimes of knowledge: “the regime of truth” and “the regime of hope” (cf. also Brown 2005). They do not, however, conceive of them merely as competing opposites; instead their relationship “… is best conceived as one of ‘mutual parasitism,’” where the two knowledge regimes “… progressively generate their own epistemic resources by translating each others” (2005, p. 73). A possible way of relating our perspective to Moreira and Palladino is to say that the translational activities between the regimes have increased in depth and scope. That would be misleading, however. Instead, we argue that there are different historical conceptions of truth produced in different social and epistemic configurations: the “relaxed” discipline-internal, the “absolute” outward, and the new “absolutist” truth. The last is inherently linked to a conception of hope which is not “blue, optimistic and light-hearted,” but rather desperate, aggressive, and “red/black.” Therefore, there is a new truth–hope regime – defined both by specific conceptions of truth and hope and by their internal, mutually constitutive relations – opposing the older regimes.

The Norwegian State covered all expenses.

The idea of the professor at Karolinska, Outi Hovatta, was to harvest from the dead fetus stem cells to be cultivated and grown until the culture was large enough for medical purposes. However, the very possibility of successful cultivation and growth was a matter of dispute and uncertainty.

Jan Helge Solbakk, who was also instrumental in the first phase of the Mehmet case.

In 2002, the US National Academy of Sciences estimated that more than 100 million people in the US alone could benefit from stem cell therapies, granting that stem cell research would eventually lead to cures for the most common “western” diseases (National Academy of Sciences 2002, p. 8).

Of course, this picture represents a tendency, and is thus an exaggeration of social symptoms. As a discursive figure, the hypersomatic individual is neither a pure objective reality nor a social construction, but oscillates in between. However, as the hypersomatic individual exercises tremendous cultural and political power, it has to be taken very seriously. The main effect of this new figure is the partial constitution of a new biomedical and biopolitical worldview.