Dirk Stemerding

The sociology of entrenchment: a cystic fibrosis test for everyone?

In this article we introduce the notion of entrenchment to conceptualize the processes in which new technological options, through the interactions between a variety of actors, become viable and established practices in society, both satisfying and modifying needs and interests. The notion of entrenchment we use as a framework for an analysis of developments and debates in the field of cystic fibrosis testing and screening in Denmark. On the one hand, it appears that the development and introduction of cystic fibrosis (CF) screening to some extent is predetermined both by existing networks of human genome researchers, clinical geneticists, patients (organizations), funding organizations, and regulatory agencies, and by existing practices like that of prenatal diagnosis. On the other hand, in Denmark, the content and future of CF screening is shaped in ongoing processes or articulation of demand for screening and of its cultural and political acceptability, processes which also involve political decision-making and which (may) result in new networks and regimes. Yet, what appears to be an inherent and undecided part of the process of entrenchment of CF screening in Denmark, is how to allocate responsibilities and authority to decide what is acceptable and what not.

Exploring Techno-Moral Change: The Case of the ObesityPill

Technology is a major force in modern societies, co-shaping most of its aspects, including established moral norms and values. Technology Assessment aims to explore the consequences of New and Emerging Science and Technology [NEST] in advance, to help create better technology. This article develops a method for enhancing our moral imagination with regard to future techno-moral change. At the core of this method lies so-called NEST-ethics, the argumentative patterns and tropes that constitute the ‘grammar’ of ethical discussions about emerging technologies. This grammar can be applied to explore at forehand the moral controversies and even the moral changes that are provoked by these technologies. In the form of alternative techno-moral scenarios these explorations can be used to inform and enhance public deliberation on the desirability of the NEST in question. This results in a type of ethical TA that is self-reflective regarding its own moral standards. To illustrate our method, we offer ‘fragments’ of a techno-moral scenario on the moral consequences of the introduction of a future ObesityPill.

Maternal serum screening, political decision-making and social learning

OBJECTIVE Analysis and evaluation of the process by which serum screening has been introduced in Dutch maternity care. In our analysis of Dutch medical journals, reports of the government and the political and cultural debate, we use a theoretical framework in which the process of introduction of new technologies is described in terms of different social learning processes. RESULTS The analysis shows a dual-track pattern: promotion by the medical community, and control and regulation of serum screening by the political decision-makers. This process left little room for social learning processes. This applied in particular to learning processes about the social and cultural meaning and acceptability of serum screening. Acceptability of the new serum screening was framed nearly exclusively in terms of freedom of choice. CONCLUSIONS A too limited framework of assessment was used. Health technology assessment (HTA) should incorporate in the evaluation process the ethical, social, cultural and political dimensions of health technology, and stimulate the interplay between different perspectives and preferences among parties involved. As a new promising approach, we suggest the use of pilot experiments that are designed as social experiments involving different parties in a common learning process.

Cancer genetics and its ‘different faces of autonomy’

Abstract In this article we discuss the development of a practice of screening, preventive treatment, and presymptomatic testing for individuals at risk of Familial Adenomatous Polyposis (FAP), a specific hereditary predisposition for colon cancer. We describe this development as a process of co-evolution, showing how this practice has been gradually taking shape in a new network of actors, routines, rules, institutions and technologies. We further argue that, looking at the emergence and transformation of this practice, we can distinguish two different regimes: a regime of prevention and a regime of self-determination. In each of these regimes the autonomy of patients and individuals at risk is shaped in a different way, that is, through a different complex of ideals, procedures, institutions, technologies, and routines. In our view, the interference between these two regimes is an important characteristic of the emergent new genetics and is reflected in the growing debate about non-directivity in genetic counselling. However, as our argument implies, when facing the challenges of the new genetics we should not restrict the debate to the quality and ethics of counselling, but extend our view to the whole complex of elements and activities which shapes individual autonomy in the context of different regimes.

How to make oneself nature's spokesman? A latourian account of classification in eighteenth- and early nineteenth-century natural history

Classification in eighteenth-century natural history was marked by a battle of systems. The Linnaean approach to classification was severely criticized by those naturalists who aspired to a truly natural system. But how to make oneself natures spokesman? In this article I seek to answer that question using the approach of the French anthropologist of science Bruno Latour in a discussion of the work of the French naturalists Buffon and Cuvier in the eighteenth and early nineteenth century. These naturalists followed very different strategies in creating and defending of what they believed to be a natural classification in zoology. Buffon failed, whereas Cuviers work appeared to be very successful. My argument will be that, to explain Buffons failure and Cuviers success, we should not focus on the epistemological or theoretical concerns and justifications of these naturalists, but on the concrete and heterogeneous means or tools through which animals were mobilized, stabilized and combined into ever more comprehensive systems of classification.

Dutch roads to a socially acceptable gene technology

We discuss two examples of Dutch policy making which were developed in the early 1990s. Both attempts can be seen as an extension of the scope of a policy of regulation in response to public concerns about developments in the field of gene technology. The first example relates to legislation introduced in the context of the Dutch Animal Health and Welfare Act. The second example relates to an institutional intervention. It concerns the activities of a Consumer and Biotechnology Foundation established in 1991. Both examples are discussed in the context of particular limitations which characterise current forms of decision making in society with regard to issues of social acceptability of (gene) technology.

Community genetics: 1998–2009…and beyond

In recent years, public health genomics has been introduced in the scientific literature as a new endeavour, aiming at the translation of genome-based knowledge and technologies into health interventions and public policies for the benefit of public health (Brand and Brand 2006; Zimmern and Stewart 2006; Gwinn and Khoury 2006). In 2009, Public Health Genomics started to appear as an international journal and a new signpost of the emerging field; however, as the editors pointed out, the new journal builds on an earlier version which was already founded in 1998, published as Community Genetics (Knoppers and Brand 2009). Thus, as a new and emerging field, public health genomics does not only embody promises and expectations for the future. It is also rooted in a history of past attempts and achievements, constituting “community genetics” as a bridge between genetics and public health (ten Kate 2005). In this context the relationship between public health genomics and community genetics has become a matter of debate. As becomes clear from the establishment of the new Journal of Community Genetics, there is a continuing interest in community genetics, defined by aims independent from public health genomics. In an interesting sociological commentary in the first issue of this journal, it is indeed observed that we should not take for granted that “public health genetics and community genetics could be viewed as one and the same” (Raz 2010). In a farewell editorial, published in the final issue of the former journal Community Genetics, Leo ten Kate likewise emphasized that community genetics “is not just a name but a unique concept, which has its own place besides clinical genetics and public health genetics or genomics” (ten Kate 2008, see also Schmidtke and ten Kate 2010; and ten Kate et al. 2010). In this commentary, I will take a closer look at the uniqueness of the concept of community genetics, using the 11 volumes of the former journal Community Genetics as my primary source material.1 My aim is not a complete review of the contents of this journal, which would be an impossible task, but a discussion of some aspects and questions which I see as particularly interesting and significant for our understanding of the concept and agenda of community genetics. What can we learn from the history contained in this former journal about the particularities of community genetics and its relation with the emerging field of public health genomics? Most revealing in this history is the tension between a conception of community genetics as a professional and regulated endeavour and as a programme of individual empowerment. Although we can see this tension as a unique feature following from the concept and agenda of community genetics, it is also highly significant, as I will argue, for the future prospects of public health genomics.

Response to Dr. Zimmern

In his letter, Dr Zimmern seeks to dispel the notion that community genetics is unique and different from public health genomics, and he argues instead that both fields are “in essence one single discipline”. Let me, first of all, clarify that a comparison of both fields was not the primary aim of my commentary. My commentary is first of all based on a detailed study of the contents of the former journal Community Genetics. The aim of this study was a deeper understanding of the way in which the proponents of this field have defined their ambitions and agenda; however, the years in which the volumes of Community Genetics were published was also the time in which public health genomics began to emerge as a new field. So, I also became interested in attempts of the proponents of community genetics to define the “uniqueness” of their own endeavour “in the light of” public health genomics. In doing so, I further added my own reflections on this new and emerging field. As I have observed in my commentary, community genetics and public health genomics are moving from different starting points but nevertheless are heading, in several respects, to a similar approach. Indeed, given my own observations on this point, I can agree with most of what Dr. Zimmern has to say about the close relation between the two fields; however, even though both fields have many elements in common, they do not simply coincide in terms of their agenda and ambitions. This also becomes clear from Dr. Zimmern’s own perception of community genetics as a “subset” of public health genomics. We find, in one of the editorials in the journal Community Genetics, a similar distinction in terms of the extension of both fields. Ironically, in this case, ten Kate conversely defines public health genomics as a nuclear family “within the extended family of community genetics” (ten Kate 2000). More important of course than these different and conflicting demarcations, are the different starting points from which both fields are approaching each other. The different roots of community genetics and public health genomics remain of crucial importance for our understanding of the particular focus defining each field. On the one hand, “empowerment of individuals with regard to informed decision-making” (ten Kate 2008), on the other hand, “translation of genome-based health information and technologies into health interventions” (Knoppers and Brand 2009). In his letter, Dr. Zimmern suggests that, “history aside”, these starting points are only a matter of a slight difference in emphasis. In my view, however, the difference between these starting points reflects an important tension. This tension is marked, on the one hand, by an individual rights perspective rooted in a tradition of reproductive decision-making and on the other hand, by an endeavour to improve population health rooted in public health values. This tension indeed also characterizes our modern health care landscape, but it involves a specific challenge, as I have argued in my commentary, for both community genetics and public health genomics. I see this challenge as highly important for the future development of both fields. That is why we should not, I think, try to dispel the notion of difference between community genetics and public health genomics, but seek to understand the different starting points from which both fields are facing this challenge, thus inviting further reflection and debate.