Alan Petersen
School Of Political And Social Inquiry Monash University, Victoria, Australia
alan.petersen@monash.edu
Sociology, like other disciplines, is inescapably normative. Despite efforts by many sociologists to avoid articulating their normative standpoint on issues or explicitly addressing normative questions, their work invariably reflects and reinforces particular values and outlooks. This is no less the case with sociology’s engagements with bioethics, a field of growing interest to medical sociologists (especially in Britain) that is defined by its concern with moral questions. My question, ‘can and should sociology save bioethics?’ may at first seem odd. It may well be asked, does bioethics need ‘saving’? And, what does sociology have to offer in this regard? However, in recent years, a number of sociologists have written articles that argue that bioethics suffers shortcomings in its approach and that sociology can lend a helping hand. The titles of the some of these articles are revealing. For example, DeVries (2003) raises the question, ‘How can we help?: from “sociology in” to “sociology of” bioethics’, signalling the need for a shift in sociological focus, while López (2002) announces ‘How sociology can save bioethics...maybe’, suggesting some doubt about sociology’s ability to save the field.
According to these and a number of other sociologists, bioethics’ contributions are limited by its adherence to so-called principlism; that is, the four principles of autonomy, beneficence, non-maleficence, and justice popularized by Beauchamp and Childress (1991). These principles, it has been pointed out, have been applied universally and mechanistically, without regard to the contextual factors that shape interactions and ethical assessments. Sociology, it is argued, can help ‘save’ bioethics, by overcoming its empirical deficits, especially through offering ethnographic studies of the contexts in which ethical deliberations occur (e.g. Fox and Swazey, 2008; Haimes, 2002; Haimes and Williams, 2007; Hedgecoe, 2004). That is, the claim is that sociology can somehow improve bioethics, to assist ‘it’ in its normative deliberations. This paper critically examines this assumption, and proposes an alternative direction for sociological work in the field of the biosciences and biotechnologies. To begin, I would like to contextualize this debate.
The Bio-economy And The Expectation Effect
As will be noted from the dates of publication of the above articles, sociologists’ engagements with bioethics are relatively recent. In fact, most articles have appeared only since 2000. This is significant, as I will explain. It is a period in which a growing number of projects focusing on the biosciences and biotechnologies, and their ‘ethical’ implications, were funded by UK research councils, charities and, to some extent, the private sector. What occurred during this period? Why did sociologists seem to suddenly ‘discover’ bioethics and its shortcomings? And, what is wrong with sociologists lending a helping hand?
The opening decade of the 2000s can be characterized as one of high optimism in relation to the translational potential of the biosciences. The humane genome had been ‘mapped’ (announced in 2000), breakthroughs in human cloning had occurred (e.g. Dolly the sheep breakthrough, reported in1997), and governments in many countries saw opportunities for building on this success in developing bio-based knowledge economies. Further, nanotechnologies were seen as offering the basis for whole new fields, including nanomedicine, with expected applications in drug delivery, biosensors, implants and artificially created organs, and molecular imaging. The period of ‘functional genomics’ was seen to have arrived. It was believed that science had solved the ‘riddle’ of how we are ‘made up’, the remaining question was how genes ‘worked’ individually and in interaction with other genes and the environment to affect health and illness. And, authorities everywhere hoped to reap the expected benefits, through ‘mainstreaming’ genetics in healthcare (e.g. new genetic tests), and personalizing medicine, that is tailoring medicine to individual genetic profiles (and thus minimizing the adverse drug reactions that are common with the use of broad spectrum drugs). The benefits to societies with rapidly aging populations and burgeoning healthcare budgets associated with treating associated degenerative conditions were seen as obvious. The concept of regenerative medicine - to restore functioning and to replace damaged and diseased tissue through engineering body parts - has been highly seductive.
The last decade has seen the launching of a number of large-scale prospective research endeavours, based upon the expectation of future dividends for health and the economy. Genetics research and stem cell research have been the recipients of huge investment and much hype. Recent innovations include population-wide biobanks, which are being developed in many countries, including the UK, the US, Australia, Canada, Scandinavia, France, and Japan (Gottweis and Petersen, 2008), as well as large programs of stem cell research at the international level (Gottweis, et al., 2009). The high expectations surrounding the biosciences and biotechnologies have been clearly evident in popular culture, including news media.
A recent article in an Australian newspaper, ‘Genome power is about to sweep the world: Nobel laureate’ (Metherell, 2011: 3), reflects the high expectations surrounding this field. The article explains that a scientist (Barry Marshall) ‘plans to become the first Australian to post his own full genetic code, or genome, on the Internet, even though it does reveal unnerving insights’. This includes the fact that he is ‘three times higher life time risk of macular degeneration and double for testicular cancer and for Alzheimer’s disease’. Another article, ‘Curing cancer and other dreams’, reports that ‘It’s hardly believable but in 20 years’ time we will be able to stop most cancer in its tracks, according to John Shine, Professor and Head of Sydney’s Garvin’s Institute of Medical Research. As the father of “gene cloning”, Shine is well placed to make such a prediction’ (Margo, 2011).
There are a couple of points to note about both these articles, which are not untypical of those appearing in national newspapers in Australia, the UK, the US and other countries in recent years. Firstly, they reflect the high optimism surrounding biomedical science and technology. Note the confident tone of the above article (‘does reveal unnerving insights’, ‘will be able to stop most cancer in its tracks’). There is little doubt about the power and value of science. Further, there is an absence of reference to the environmental factors and gene-gene interactions that make it extremely difficult if not impossible to identify the genetic basis of most diseases (Holtzman and Marteau, 2000). Secondly, the articles rely heavily on the predictions of scientists themselves. Scientists have been found to be major sources in news stories on genetics, which allows them considerable scope to ‘frame’ issues, to highlight the significance and potential benefits of research (Conrad, 1999; Petersen, 2001, 2002). Through the use of public relations, scientists have sought to control public discourse and the science policy agenda. However, in reality, it has often proved difficult to ‘stay on message’, with optimistic, utopian portrayals competing with dystopian portrayals in coverage about issues such as cloning and stem cell technologies (Petersen, 2002; Petersen, et al., 2005).
Scientists sometimes ‘overhype’ the science, promising more than can be delivered – at least within foreseeable timeframes – with the danger that publics become disillusioned and lose confidence. Overly optimistic projections can have pernicious effects, including fraudulent behaviour among competing scientists, as seen in the case of the Korean scientist, Hwang, outlined by Gottweis and Kim (2010) and Kitzinger (2008). Sociologists such as Nick Brown (2003) and Adam Hedgecoe (2004, 2010) have highlighted the unintended consequences of overly optimistic predictions in relation to new biotechnologies. One danger that they point to is the onset of public disillusionment following unfulfilled expectations. An important, but unacknowledged danger is incautious decision-making, and extreme risk-taking, occasioned by belief in the expectations generated by scientists and those who stand to benefit from new technologies.
Some providers are already exploiting the opportunities that are seen as presented by new biomedical innovations. Genetic tests are readily available via the Internet, such as tests for BRCA1 and BRCA2 genes for breast cancer. And, there is evidence of consumers using the results of such tests to undergo treatments as a consequence. A recently reported case is that of a woman who had both her breasts removed as a prophylactic measure following a test for these genes (Phillips, 2010). Stem cell treatments available in a number of countries are currently marketed directly to consumers via the Internet, contributing to the phenomenon of so-called stem cell tourism. These treatments are marketed as offering hope to those who otherwise have little or no hope of achieving successful treatments in their own countries (Petersen and Seear, in press). Thus, to some extent the future has arrived – expectations are being realised – but is the reality as imagined? Are these early stage innovations as beneficial as providers claim?
The Narrow Focus Of Research And Debate
Bioethics, and sociologists who link themselves to bioethical agendas, have tended to adopt an overly narrow framing of their field of normative enquiry. As Hedgecoe (2010) notes, bioethics has tended to reflect the technological expectations of science. There has been little questioning of scientists’ claims about the overall direction of science and forecasts in relation to resulting innovations. Despite bioethicists’ claims to be able to scan the horizon of technological innovations, the horizon has already been scanned by scientists, and others; a definition of the relevant ‘ethical’ issues has occurred (Hedgecoe, 2010). A focus on ‘technologies’ in the abstract pervades the writings of bioethicists, sociologists and other social scientists who research and write about bioscience/technology issues, notwithstanding the growing influence of science and technology studies and its concepts such as ‘co-construction’ of science and society and of users and technologies (Oudshoorn and Pinch, 2003).
Most sociological investigations of ‘bioethical’ questions concern issues pertaining to the clinic (‘clinical ethics’), or to single research projects of limited scope and duration (‘research ethics’); for example, studies of decision-making processes pertaining to clinical trials, genetic testing, IVF, PGD, or ethics committees. These are sites and topics that have already been ‘mapped’ and ‘colonised’ by bioethicists, and others who have a declared stake in these issues. They mostly involve technologies that have already emerged and are in use. Sociologists have tended to overlook the applications of bioethics in programs of research such as those noted above that are prospective in character, that involve applications at the level of populations, and investment that is long-term and requires the participation and support of diverse publics. There has been little recognition and analysis of the politico-economic processes underlying technological innovations, including governments’ commitments to bio-based knowledge economies.
Sociologists have failed to recognise the significance of bioethics’ principlism in neo-liberal societies, and its impacts on thinking about health and healthcare. Further, they have been slow to explore the socio-political implications of research investment, of the social inequalities that arise or potentially arise from the development and use of specific innovations, and of moral questions posed by the commodification of life. These are all questions where sociologists may play a significant role – in drawing attention to and critically analysing issues neglected by principles-based bioethics – and in charting new terrain for sociologically based normative inquiry. However, sociologists’ engagements with bioethics have been largely limited to the issues defined by bioethics itself and those who have declared an interest in the ‘ethics’ of the new biosciences/technologies.
Why This Sociological Neglect?
While there are a number of potential explanations for this sociological lacuna, the system of research support must take much of the blame. Sociological research undertaken in the field of the biosciences and biotechnologies during the last decade or so has been closely tied to government, private sector, and philanthropic agendas and funding. This includes bodies such as the Economic and Social Research Council (with its special initiatives such as the Innovative Health Technologies Program, e-Society Program, Genomics and Society Program (involving two, five-year tranches of allocated funds (coming to an end in 2012), and the Stem Cell Program); the Engineering and Physical Sciences Research Council (which, in recent years, has been receptive to social science involvement in its essentially technologically-driven research programs); the Medical Research Council; the European Commission Framework Programs; the Wellcome Trust research programs (including Bioethics and Public Engagement in Science programs); the Leverhulume Trust; and the US’ National Institute of Health programs and Human Genome Project (HGP) ELSI (Ethical, Legal, and Social Issues) research program. The theme of ‘Science in Society’ has enjoyed popularity over the last decade, and in the UK has been sponsored by governments, charities, science and media bodies, and NGOs (Cullen, et al., 2007).
Some of this research is funded by initiatives that have an explicit focus on ‘ethical’ questions. This includes those of the HGP’s ELSI research initiative, and the Wellcome Trust’s Bioethics Program of the 1990s and its current Ethics and Society Program. In many cases, the ‘ethical’ questions and favoured perspectives or expertise have already been stipulated or assumed by the sponsors/funders. Those applying for funds via these initiatives need to demonstrate conformity to the funding guidelines and produce particular kinds of outputs and demonstrate that their work has ‘policy relevance’. This works against the creation of critical, innovative work, which is likely to arise from interdisciplinary, ‘blues-skies’ investigation. Many of these initiatives, especially those of the Wellcome Trust - a ‘big player’ in this field - have tended to favour moral philosophy-based bioethics’ perspectives and expertise.
Bioethics And The Politics Of Legitimation
Sociologists who have engaged with ‘bioethical’ questions then have tended to link their work closely to existing research initiatives, including those that are framed as ‘ELSI’/‘bioethics’ to begin with. Sociologists have seen and exploited opportunities and built research programs around the research agendas of others, and have often found receptive collaborators in science and bioethics’ communities who recognize the missing ‘social’ dimension within the field. The arena of genomics/genetics is a clear case in point.
The launching of the ESRC’s Genomics Network in 2002 created four large research centres (Cesagen, Egenis, Innogen and Genomics Forum) around the UK, which has created new careers and opportunities for many sociologists and other social scientists, and philosophers. Many scholars moved into the field from other areas, such as science and technology studies, and the philosophy of biology. This initiative was a direct response to the UK Government’s aim of furthering genomics/genetics research, and engendering collaborations between social scientists, philosophers and natural and medical scientists in order to address the social, economic and policy aspects of such research. There was never any effort to establish whether such research and the associated network structure was supported by ‘the public’ and was likely to deliver work of social value, and the model that was eventually adopted, involving a cluster of research centres, was actually rejected by the social scientists who were asked for their views. However, once established, the network generated and supported a thriving community of scholarship focusing on the social and ethical implications of genomics and genetics that was broadly aligned with the Government’s objective to promote genetics-based healthcare (Department of Health, 2003).
In this context of support for biotechnology from the Government, and the private and charitable sectors, ‘bio-ethically’ interested groups, including philosophers, theologians, lawyers, medical practitioners and social scientists, have been called upon to help lend legitimacy and consent to particular policies and programs. As an already legitimated knowledge in the bioscience/technology arena, bioethics could easily lay claim to offering the appropriate expertise to help resolve the ‘ethical’ dilemmas arising from such innovations. As DeVries, et al. (2007) has argued, ‘bioethics’ is not a singular field dominated by one kind of expertise; indeed, research indicates that research committees deliberating on bioethics issues tend to be dominated by lawyers, theologians and medical professionals, rather than by self-identified ‘bioethicists’ (e.g. Salter and Salter, 2007). However, bioethics has developed a body of principles and frameworks, and ways of reasoning, that have found congruence with bureaucratic, formal procedures and the neo-liberal policies that dominate contemporary healthcare, and other spheres of life.
Principles such as ‘respect for autonomy’, the ‘right to know’, and ‘informed choice’ are those that support neo-liberal subjectivity where independence and an entrepreneurial approach to life are valued, indeed expected (Petersen, 1996; Petersen and Bunton, 2002). Bioethics has been valued because it offers a language that appears disinterested, ‘context-less’, and thus can be shared by different disciplines and constituencies with often very different perspectives and value standpoints. It appears to ‘take the politics out’ of decisions about inherently contentious issues, such as funding priorities, views on life, and who ‘wins’ and who ‘loses’ from policy decisions. And, it has served to restrict debate to ‘safe issues’ upon which there is already broad agreement – through a process of ‘non-decision-making’ (Bachrach and Baratz, 1963) - such as how to ensure that individuals who participate in research are ‘fully informed’ about the purposes of that research, what is expected of them, and their rights within that context.
In their effort to legitimize their own knowledge and social role, bioethicists have generated various ‘origin stories’ (Fox and Swazey, 2008). These include the technology-driven genesis, reference to key events (e.g. the Nuremberg trials) or organizational moments, or the coining of ’bioethics’ (in 1970) (2008: 25-28). These are dominated by what Kim Little calls ‘clean break’ accounts (Little, 2002), that suggest that bioethics emerged suddenly and as a response to recognized earlier injustices, such as the Tuskegee research undertaken between the mid-1930 and early 1970s, where Black Americans with secondary syphilis remained untreated (Rothman, 2003: 183). These self-representations portray the field as progressive, as emerging as a defender of ‘the public interest’ and standing up for the rights of the individual against medical paternalism. Common to these accounts is their technology focus, reflecting rather than challenging the technological expectations of science. ‘Technology’ is reified, treated as a thing, rather than as a social product. There is little reference to the contexts generating and supporting visions of technologies and their applications, let alone efforts to draw attention to and challenge the interests that promote these visions.
Technological expectations need to be sustained over the longer term, especially with many of the new genetic, stem cell, and nanotechnology innovations, which involve large research teams and significant financial investment, and call upon the participation and support of diverse publics. Therefore, the public representations of the science need to be supported through various reiterative practices, such as staged news releases, the extensive use of PR, and other means. With the strong ‘translational ethos’ that pertains to stem cell research and other contemporary areas of bioscience/technology (Maienschein, et al., 2008), scientists need to show ‘up front’ in their grant applications that their research will deliver health and social benefits. This leads them to frequently ‘hype’ the significance of their work, with the risk of promising more than can realistically be delivered, with the attendant dangers that I referred to earlier. There are numerous impediments to fulfilment of expectations - economic, political and socio-cultural. And, as the financial crisis of 2008-09 revealed with the rapid fall in biotech shares, the bubble of expectations may quickly deflate, leading shareholders to abandon the market, and leaving innovations without funding and support.
In the next and penultimate section, I wish to illustrate some of the ways in which bioethics and its knowledge have been deployed to help legitimize research agendas, making reference to some major fields of biomedical innovation; namely, biobanks, stem cell research, and nanotechnologies. I will then conclude by proposing a way forward for sociology beyond bioethics, which I believe is the direction in which sociologists should be moving.
Biobanks
The emergence of biobanks – or population-wide repositories of genetic, medical and lifestyle information – in many countries over the last decade has reflected the high optimism for ‘post-genomic’ medicine. Biobanks were seen to potentially deliver many benefits for the population. For governments and proponents of new genetics, these included the elimination of disease through predictive and ‘personalised’ medicine; reduced health care costs, which are expected to burgeon with the ageing of populations; improved risk management, through data that will assist individual lifestyle changes; and the empowerment of individual, the assumption being that those equipped with more information about their genetic susceptibility will have more options in healthcare. For the commercial sector, there was seen to be the potential for profitable new drugs through the field of pharmacogenomics/genetics and new diagnostic tests that will allow the prediction of risk for those with a range of genetic-based conditions. As noted, there has been much optimism concerning personalized medicine, and biobanks have been conceived as offering the research tools for disentangling the genetic and environmental factors that predispose to illness, and thus paving the way for the development of drugs tailored to the genetic profile of the individual or groups of individuals.
Many governments, scientists and industry groups have ‘signed up’ to this vision of genetics-based healthcare, as reflected in various national policy statements appearing during the last decade. The World Health Organization, too, shares this vision, seeing potential for genetic research to assist in eliminating communicable diseases, haemoglobin disorders, and other conditions (WHO, 2002). According to a recent publication, Bioscience for Life?, produced by GeneWatch UK, in Britain, the ‘genomic revolution’ in healthcare was promoted by a small group of influential government advisors, many of whom were working in medicine and/or had had close links to a range of commercial interests, such as the pharmaceutical industry (2010: 95-6) The idea of the biobank proved easy to sell to governments. National or state/provincial biobank projects such as UK Biobank, Hunt 3 (Norway), the Health Sector Database (Iceland), Généthon (France), and the WA Human Genome Project (Australia) have been proudly promoted as national or regional ‘flagship’ projects, marketed on the basis of their uniqueness and potential to deliver future public benefits (see Gottweis and Petersen, 2008; Petersen, 2005).
Despite the numerous substantive issues raised by such collections – including whether they represent a good use of resources, the implied commodification of the body, the privatisation of what is arguably a shared community resource, and the potential for surveillance – ‘bioethical’ contributions have been limited. The main issue for bioethical deliberation has been informed consent – a concept originally developed with the context of single, short-duration research projects and the medical encounter – that is challenged by population-wide prospective collections such as these. Biobanks may hold genetic, medical and other personal information for many decades and the research purposes are mostly unspecified at the outset, creating considerable problems in relation to consent. Bioethicists and the social scientists who have assisted with deliberations on the ethics of such collections have agonised over how to reap the perceived benefits of biobanks while ensuring a form of consent that complies with established bioethical principles. It should be noted that not all biobanks encounter such ethical quandaries. In Japan, for example, Biobank Japan was established relatively quickly in the absence of any serious public consultation and any formal process of engaging with scientific and ethical communities (Triendl and Gottweis, 2008: 124-25). Where bioethics expertise and knowledge have been utilised, however, this has generally involved reference to a narrow set of principles that may be adopted or adapted in developing ethics and governance protocols. There has been little debate about substantive issues, such as whether such collections should be supported at all, how best to engage communities, and who will be the likely ‘winners’ and ‘losers’ from this genetics-based approach to healthcare. Bioethics and social science expertise has been largely used to help lend legitimacy and gain consent for projects, which have already achieved the support of governments, and influential scientists and industry groups (Petersen, 2007)
Stem Cell Research
The field of stem cell research is subject to similarly high expectations and has been the recipient of substantial government funding over the last decade. In 2009, the US’ National Institutes of Health spent $1 billion in this field, which was double the expenditure of 2006 (NIH, 2010). Applications of stem cells currently are limited to the use of bone marrow and cord blood for diseases of the immune and blood system (Strauss, 2010), with the progress from research to treatments being slow. While most research has involved adult stem cells rather than human embryonic stem cells – which are seen to have the greatest pluripotent potential – scientists remain divided about the most productive direction for research. This is a field marked by various conflicting pressures. On the one hand, there is a strong ‘translational ethos’ (Maienshein, et al., 2008), which demands that research be rapidly translated into new treatments. Some of the pernicious consequences of this pressure have been referred to; e.g. the Hwang case. On the other, scientists recognize that research will need to be long-term, and that the ‘breakthroughs’ will require ongoing public and policy support, and considerable funding and trust that benefits will in time accrue. However, opposition to the field – or at least what is widely seen to constitute the ‘tampering of nature’ (using and destroying ‘spare’ embryos) – remains widespread and strong. This opposition has shaped the field of stem cell research – with scientists seeking to overcome these moral objections by exploring alternative sources of stem cells – such as induced pluripotent stem cells (iPSC). And, it has shaped ‘ethical’ debates that have occurred over the last decade.
Where bioethicists have contributed to this field their discussions have been narrowly focused on the moral status of the embryo, as though this was the only or most important normative issue to consider. The agenda for debate has been established by the ‘right-to-life’ groups and by the Catholic Church who object to the destruction of human embryos during research. My analysis of articles on stem cell research appearing in the academic journals, Bioethics, and The American Journal of Bioethics, underlines this ‘embryo-centric’ focus of enquiry (Petersen, 2011). Social science and regulatory debates have been overly occupied with questions about how best to regulate the technologies so as to avoid the unnecessary destruction of life and to protect the health and wellbeing of women who may donate embryos. As with bioethicists, sociologists and other social scientists have tended to reify ‘technology’, and to overlook the social production of technologies. Broader questions such as those relating to the political economy of stem cell research, including research-funding priorities, relations between scientists, policymakers, and the bio-industries, and the politics of policy formation, have been largely ignored. Despite growing evidence of an early market in stem cell treatments in various countries – the stem cell tourism phenomenon, referred to earlier – there has been little analysis of the processes underlying the generation of the expectations that sustain this field, and the implications for patients and their families who are desperate for treatments.
Nanotechnologies
Finally, nanotechnologies are often described in terms of their ‘revolutionary’ potential, for ‘enabling’ new applications not just in medicine, but also in environmental sustainability and economic development. One Australian estimate is that nano-enhanced or –produced products will generate $2.84 trillion by 2015 (Aust. Office of Nanotechnology, 2009). Scientists and policymakers in the UK see great potential in a range of fields in medicine and healthcare in coming years, as outlined in the landmark report, Nanoscience and Nanotechnologies: Opportunities and Uncertainties, produced jointly by The Royal Society and The Royal Academy of Engineering, in 2004. As the subtitle of this report reflects, this is a field characterised by uncertainties. These surround the science, the physical and environmental risks, and public responses. The latter have been a major concern in some jurisdictions, especially the UK, with frequent references to the potential for a ‘GM-style backlash’ in official communications in recent years (RS-RAE, 2004). There is a concern that public fears about the technologies and their impacts (described by some as a potential ‘new asbestos’) may lead publics to reject what are seen by many scientists, policymakers and industry groups as a highly promising set of technologies.
Despite the many uncertainties that surround this field, whose parameters and impacts will be defined by the convergence of technologies (e.g. genetic, digital, and neuroscience) much public discourse has focused on biophysical risk. In particular, in the UK and Australia, the issue of the safety of manufactured nanoparticles has dominated discussion. In the UK, soon after the launch of the RS-RAE report, The Guardian newspaper reported, ‘Nanotechnology poses threat to health, says scientists’ (Semple, 2004). The article noted that ‘New laws are needed to ensure that vanishingly small particles made by the nanotechnology industry do not pose a threat to humans or the environment, experts said yesterday.’ (2004). The report actually said that the risks were uncertain and that further research was needed. Similar concerns about nanoparticle safety, expressed particularly by the trade unions, have been subsequently voiced in Australia (e.g. Harrison, 2009). This narrow framing of ‘the problem’ posed by these technologies diverts attention from a broader range of issues posed by innovations in this field. This includes the extensive research funding in a field of high expectations and many uncertainties. In the UK, Europe and more recently Australia effort has been expended in ‘public engagement’ initiatives in relation to nanotechnologies, which are seen as offering something of a ‘test-bed’ for a new kind of science-society relationship. The language of engagement suggests a more democratic, transparent approach to science communication, which has long been dominated by the so-called deficit model of public understanding. Social scientists, philosophers and bioethicists have contributed to these communication efforts, much of which has been funded by governments (e.g. in the UK, the Science-wise Program, and in Europe via the European Commission’s ‘Science in Society’ Program).
Increasingly, bioethics’ concepts and reasoning has entered deliberations about the normative implications of nanotechnologies. This is evident with the new journal Nanoethics, launched in 2007, where there has been much discussion about the applicability and utility of established bioethics, and the emergent field of nanobioethics, which focuses on the biomedical, biotechnological, and agrifood applications of nanotechnologies. In Europe, philosophers and bioethicists have helped develop ‘tools’ for assessing engagement/dialogue strategies and practices and tactics that can be used to ‘engage’ different audiences (European Commission, 2010). As with biotechnologies, ethical discussions have tended to reflect the technological expectations of science, so that there has been little effort to understand or challenge the forms of ‘top-down’, expert-driven approach to technological development and associated communication processes that have been developed. Despite evident shortcomings of these engagement efforts (e.g. Gavelin, et al., 2007), bioethicists and social scientists have not reflected on the role of engagement in the politics of technological innovation, or their own contributions to this process. Rather than offering a critical voice in relation to the expectations and visions that surround this field, they have lent their expertise to help legitimise policies that are supported by governments, industry, and science. The field of nanotechnologies provides another example of where bioethics has failed to offer critical perspectives and where sociologists and social scientists have been called upon to help engender public consent for technologies that are seen as self-evidently oriented to ‘the public good’.
What Lessons For Sociology?
What lessons may one draw for sociology from this experience of its engagement with bioethics and ‘bioethical’ questions thus far? And, what might be a fruitful way forward for sociologists who believe that they have something useful to contribute to this field?
These case studies highlight that bioethics’ principles and reasoning have been used in ‘over-extended’ ways. That is, a body of knowledge and related practices that developed in the context of clinical practice and single research projects of limited duration are now being applied in a very different context, to a set of research programs of long-term duration, that affect whole populations and that require the support of diverse publics. In its preoccupations, bioethics has reflected rather than investigated and challenged the technical expectations of science. There has been little questioning of these expectations; indeed, in many if not most instances, it is taken as given that technologies will evolve as predicted and that the technologies that have emerged are a consequence of some inherent scientific imperative; a reflection of modernist progress. Questions concerning politics and power have been framed out of consideration. Bioethics’ technology focus has diverted attention from substantive questions such as, who decides what technologies get developed? Who exactly benefits and who is disadvantaged by innovations? Does the development of particular technologies represent a good use of public resources? And so on.
Abstract, moral philosophy-based bioethics is incapable of addressing such questions because the underlying epistemology of the field is blind to such questions. Bioethicists and those who are strongly influenced by bioethics’ ideas and principles have a trained incapacity to see the ‘big picture’ shaping technological innovations. Given this, it is hardly surprising that bioethics expertise is so influential within government and science communities. It offers no threat to dominant interests, and it serves as a useful tool of governance, in lending legitimacy to innovations for which there is considerable official support and momentum. Further, its principlism has served to restrict debate and action on substantive issues. The most important questions are never on the agenda for public debate and deliberation and remain in the sphere of ‘non-decision-making’. Consequently, rather than seeking to ‘save’ bioethics, I propose that sociology unlink itself from bioethics’ agendas, and move beyond bioethics, to develop its own normative approach to bio-knowledge, which includes bioethics itself as a topic of critical enquiry.
In developing such an approach, we need to begin by recognizing the point I raised at the outset; namely, that sociology is always normative. What this means is that sociologists should not just study norms but propose norms or seek to negate sociology proposing them (Sztybel, 2009). Sociology, and the social sciences more broadly, need to recover value rationality, which has been lost or downplayed as a result of the dominance of technical rationality (Flyvbjerg, 2001). This technical rationality has arguably contributed to the discipline’s disinclination to engage explicitly with normative questions, and to remain subservient to bioethics, which is seen as having a priori claim in the bioscience/technology field.
A normative sociology of bio-knowledge would focus centrally on the workings of politics, power, ideology, discrimination, social justice, and the promotion of human rights - areas of traditional sociological concern. In other words, it should study ‘up’ rather than ‘down’, which has been the tendency in much sociological study of ‘bioethical’ issues, and more generally. And, while this does not preclude the study of micro processes of ethical decision-making, such as occurs in the clinic and in relation to research, it calls for the conceptualization of the links between these micro concerns and macro structures and processes. It would encourage reflection on the ways of knowing associated with bioethics itself, and the social and personal impacts of ‘ethicization’ (Hisano, 2008) that increasingly pervades many spheres of life, as well as exploration of the scope for resisting this. Elements for such a sociology can be found in disparate work under way in fields such as feminist studies, especially feminist bioethics, which rejects principlism and seeks to build a human-rights’ focused approach to the normative issues arising from the biosciences/technologies, from science and technology studies, and from the nascent sociology of human rights that is being developed by scholars such as Bryan Turner. Sociology has a rich tool kit of concepts with which to explore, make sense of, and offer responses to bio-knowledge. Sociologists should utilize these concepts to chart a new direction for their work, rather than being shackled by bioethics imperialism, which has limited their horizons and critical contributions to a field of potentially far reaching significance.
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