In this paper presentation we argue that the international disability movement makes visible that modern medical prevention may need to be understood based on the term community. Through the term, it is assumed that there is a culture within the disability movement that creates not only community, but also a strong self-identity linked to biological facts. Within some groups, this self-identity is very strong and not infrequently the self-identity can be linked to a pride in who one is and to which group one belongs. Based on this community, the phenomenon of medical prevention needs to be problematized when modern biotechnologies are introduced into healthcare.

A desire for increased prevention in society not only creates a desire to, for example, screen to detect genetic changes at the fetal stage, but can also lead to expectant parents terminating the pregnancy. When fewer and fewer children are born with a disability, there is also the risk that the group becomes impoverished and the community dissolves. The members simply become fewer. The disability movement sometimes sees this as a struggle and that one should not betray one's community.

We therefore will argue that community is an important starting point for understanding and problematizing the many, and difficult, approaches that exist in relation to today's modern biomedical technologies. It is easy to focus solely on the pregnant woman's right to choose in this complex discussion and not bring in or discuss other perspectives. Based on the question, Shakespeare has, for example, pointed out that a change in society's attitudes to disability could be more effective than using modern biotechnology. In our paper, we wish to examine the concept of community in more detail and, based on the concept, make a reading of how this discussion is conducted internationally within the disability movement.

The rapid development in biomedicine creates knowledge-intensive policy fields on national and international arenas. In our ongoing project “Biomodifying technologies in change” we study presumably game-changing technologies such as CRISPR-cas9, iPS cells, xenotransplantation and 3D bioprinting. The project could be categorized as part of an ”engaged program”, using Sismondo’s terminology (2008), in that we do not separate the epistemological dimensions from the political aspects of the science practices we study. Rather, we understand language and material processes in research as already in themselves always normative. Hence, the strife to make transparent and democratize scientific and technological processes, is somehow built into the research scope itself - even if not a directly activist agenda.

One of the aims of the project is to understand how “responsible researchers” are fostered. We look into how ethical reflexivity is expressed, practiced and understood in the day-to-day of biomedical research environments. But what happens to our knowledge production when we make biomedical researchers engage in this bird’s-eye view on their research and its socio-cultural circumstances? How can neither taking a distanced position, nor engaging in direct activism but rather pushing toward areas we consider possible hotbeds for public debate be further theoretically conceptualized? What does such an endeavor imply for our role as STS scholars? And how does that connect to the tendency to engage humanities and social science scholars as interpreters and mediators in cross-disciplinary projects in knowledge-intensive policy fields, such as ours ? In what way is the symmetry principle (Bloor, 1976) affected, when value-laden initiatives as ethical reflexivity and public engagement is treated as an inherent good or as “truths” to be pursued?

Background

Rich in different kind of potent cells, embryos are used in modern regenerative medicine and research. Neurobiologists today are pushing the boundaries for what can be done with embryos existing in the transitory margins of medicine. Therefore, there is a growing need to develop conceptual frameworks for interpreting the transformative cultural, biological and technical processes involving these aborted, donated and marginal embryos. This article is a contribution to this development of frameworks.

Methods

This article examines different emotional, cognitive and discursive strategies used by neurobiologists in a foetal cell transplantation trial in Parkinson’s disease research, using cells harvested from aborted embryos. Two interviews were analysed in the light of former observations in the processing laboratories, using the anthropologist Mary Douglas’s concept of pollution behaviour and the linguist, philosopher, psychoanalyst and feminist Julia Kristeva’s concept of the abjective to explain and make sense of the findings.

Results

The findings indicate that the labour performed by the researchers in the trial work involves transforming the foetal material practically, as well as culturally, from trash to treasure. The transformation process contains different phases, and in the interview material we observed that the foetal material or cells were considered objects, subjects or rejected as abject by the researchers handling them, depending on what phase of process or practice they referred to or had experience of. As demonstrated in the analysis, it is the human origin of the cell that makes it abjective and activates pollution discourse, when the researchers talk of their practice.

Conclusions

The marginal and ambiguous status of the embryo that emerges in the accounts turns the scientists handling foetal cells into liminal characters in modern medicine. Focusing on how practical as well as emotional and cultural strategies and rationalizations of the researchers emerge in interview accounts, this study adds insights on the rationale of practically procuring, transforming and utilizing the foetal material to the already existing studies focused on the donations. We also discuss why the use and refinement of a tissue, around which there is practical consensus but cultural ambiguity, deserves further investigation.

Parkinson’s disease is a neurodegenerative affliction to whichresearchers have long striven to find a cure. The human embryois a source of vital cells used in regenerative medicine, as well as apowerful symbol of life. Using foetal cells from aborted embryosfor transplantation to the brains of Parkinson patients is an avenuethat has been explored by neuroscientistson and off for the lastthirty years. This ethnological compilation thesis follows a nationalbranch of a foetal cell transplantation trial through successes as wellas challenges in processing foetal material into an effective, transplantablecell suspension. The cell suspension is conceptualized as abio-object, and explored as something that produces new knowledge,emotions and logistical and ethical negotiations. These products arebeyond the scope of the trial and biomedical research in general, butthey do nonetheless interact with and affect society at large.New biomedical inventions and forms of therapies transgress thelimits of life and death and the boundaries of individuals, as well asbetween species. Such cultural reordering challenges researchers,health care professionals as well patients on a daily basis. Exploringthe intersection between instruction and practice, nature and cultureas well as between science and ritual, this thesis contributes to abroader understanding of cultural and material conditions ofknowledge production. It also offers a methodological elaborationof how a diffractive approach may be fruitful in ethnographicresearch, when trying to reconcile epistemological differences incross-disciplinary endeavours.The thesis is itself a product of multidisciplinary cooperation, inwhich the researcher is affiliated with the milieus the Departmentof Art and Cultural Sciences and the Basal Ganglia DisordersLinnaeus Consortium (Bagadilico) of the Medical Faculty, bothat Lund University, as well as the Learning and Media Technology(LET) Studio at Gothenburg University.

In the quest for a cure for Parkinson’s disease, scientists have travelledmany avenues. One is the use of cells from aborted fetuses. These cellshave been proven to restore the lacking dopamine production in thebrain of the afflicted person. In order to place the cells inside the patient’sbrain, a so-called cell suspension must be made and administered, whichis a liquid produced in a laboratory containing mainly foetal brain cells.This can be transplanted either into rats for research or into human subjectsfor clinical trials, and theoretically for treatment.For people encountering the cell suspension, it enters their lives indifferent ways, giving it diverse shape and meaning; it also gives rise tomany different kinds of expectations. Thus, a delicate issue such as theuse of the cell suspension, with its foetal origin, provides a good basisfor discussing what I would call ‘science’s understanding of/engagementwith knowledge’. Normally when issues of participation in scienceare discussed, it is done in relation to how stakeholders and otherwiseaffected people such as for example patients and relatives understand science.The so-called ‘information deficit model’, where the public wasseen as lacking in knowledge and understanding, was a concept commonin the research field of the ‘public understanding of science’ (Evans &Durant 1995; Sturgis & Allum 2004). This model was gradually replacedby views in which engagement and information exchange were regardedas more of a two-way communication between researchers and the public;lay-people’s understanding was also seen as a kind of knowledge. Thedevelopment of a more reciprocal view of knowledge is expressed in thenewer concept of ‘public engagement with science and technology’ (see e.g. Stilgoe, Lock & Wilsdon 2014). Still, even with the newer terminologyand the ideas connected with it, much of the focus is on the ‘recipients’of scientific results, and less on those who produce them. This isproblematic, because it sets the researchers’ views apart as somethinglargely free from values, meaning and desire, as opposed to the afflictedlay-peoples’ views. In this chapter, I will give a more nuanced and complexpicture of how scientists value what they do. With the help ofinterviews with two laboratory researchers, I focus upon how they understand,value and provide meaning to the foetal cell suspension that theywork with. I argue that they do it differently, depending on how theyinteract with the suspension. The aim is to gain a better understanding ofhow the scientific knowledge comes into being in a scientific laboratory.The analysis thus problematizes how participation can be understood ina laboratory context.

Throughout scientific work and research,many processes and procedures are maderoutine, mundane and then taken forgranted. So are some underlying assump-tions – not only about the state of the nat-ural world, but about what its different ac-tors are supposed or expected to be orwork like. These assumptions are not onlydescriptive, but prescriptive. If we pro-ceed from the notion that expectations andbeliefs are written into our everyday prac-tices and made opaque even to their prac-titioners, it becomes an urgent issue tofind tools to better scrutinize and evaluatethem. This is, I argue, a matter of ethics.How such assumptions are written intopractices is perhaps as available as ever, inthe instructions, documents and processesof evidence-based science. When somepremises and practices are locked to eachother, others are excluded. The aim of thisarticle is to explore the dynamics of thisprocess in a biomedical research practice,with regard to how it affects what are con-sidered ethical issues and how they arehandled.Based on ethnographic fieldwork, I willinvestigate what happened when staff in alarge-scale and multi-site cell transplanta-tion trial in Parkinson’s research had toscrutinize their procedures. I want to un-derstand what subsequent negotiationsneeded to be done in order to progress; or,more specifically, what deliberationsabout perspectives, procedures and ethicalissues of the project were required to seethe trial through. The focus is on what thestaff described as causing the major delaysthat they faced, and temporality is subse-quently conceptualized as an importantfactor in the homogenization and repro-ducibility of science. I discuss how thenecessary changes and negotiations relateto the aims and standards presented by therationale of evidence-based science, andthe implications they have for researchpractice of future trials and for researchethics.I argue that investigations such as thisare crucial to better understand how ethi-cal dilemmas are not primarily abstractdeliberations addressed in policy docu-ments, but embedded in everyday prac-tice. I will also address the importance ofethnographic practices to this end.In the following, the content and theconditions of the trial will be presented incontext.

This essay will concern itself with what we – ethnologists or ethnographers by any other name – do. Not primarily “do” in terms of activities we undertake; we interview, we observe, we write, we send emails, we have coffee, we print stacks of paper, we structure administrative chores, we go to meetings, we apply for grants, etc. Rather, we want to address the “do” in terms of what we make, or bring into the world through ethnography. What is it that we through the combination of all of our practices bring into being? What is that bringing into being dependent on? And, how does it influence the world? The first step to addressing these questions is outlining ethnography itself and how we – the authors – choose to articulate it. Articulation, as articulated by Donna Haraway is a process of signifying and of putting things together, letting them be diverse and maybe even in friction with one another and themselves. The concept connotes an on-going indeterminacy. The articulations made in research, we argue, should be allowed to be of a searching quality, as well as being relational and expressive. They should not excuse themselves, neither make greater claims than they can fulfill. They should never be conclusive. 

A qualitative pilot study on the attitudes of some citizens in southern Sweden toward predictive genetic testing – and a quantitative nation wide opinion poll targeting the same issues, was initiated by the Cultural Scientific Research Team of BAGADILICO. The latter is an international biomedical research environment on neurological disease at Lund University. The data of the two studies crystallized through analysis into themes around which the informants’ personal negotiations of opinions and emotions in relation to the topic centred: Concept of Risk,’Relations and Moral Multi-layers, Worry, Agency and Autonomy, Authority, and Rationality versus Emotion. The studies indicate that even groups of people that beforehand are non-engaged in the issue, harbour complex and ambivalent emotions and opinions toward questions like this. A certain kind of situation bound pragmatism that with difficulty could be shown by quantitative methods alone emerges. This confirms our belief that methodological consideration of combining quantitative and qualitative methods is crucial for gaining a more complex representation of attitudes, as well as for problematizing the idea of a unified public open to inquiry.

‘And if it’s going to die, that little foetus, then it doesn’t matter to me at what stage.’(Patient on the use of foetal neural cells versus the use of embryonic stem cells)

This quote neatly captures a central difference between patients and non-affected respondentsin a focus group study of attitudes towards foetal neural cell research and therapy forParkinson’s disease. The patients of the study displayed a pragmatism verging on unconcernin the ethical issues concerning the foetus and its human status; this to a considerably higherdegree than the non-affected respondents, who, on the contrary, seemed quite preoccupied bysuch issues.Parkinson’s disease is a severe neurological disease with symptoms such as rigidity, slowmovement, tremors and sometimes depression and dementia. The aim of this essay is toinvestigate how patients with this disease and non-affected individuals reason about researchthat uses foetal neural cells. The focus is on their thoughts about what is ethically defensible inthe search for treatments for Parkinson’s disease.As such, it falls within the framework of focus group interviews conducted in Sweden as partof the EU project TRANSEURO (<http://www.transeuro.org.uk/>).1 One of the key findingsof the Swedish focus group study is that the participants’ ethical attitudes closely correlate totheir relation to the disease. This means that whether you are afflicted or in other respectsaffected by the disease or not will be highly relevant for your ethical stance. I will argue herethat individual circumstances also largely determine the motives and effects of ethicalreflection. I also elaborate on the role of gut feeling in ethics (see Lakoff & Johnson 1999;Lundin, this volume) and how it relates to what I would term anthropocentric concerns.Ulrich Beck’s concept of individual ethical reflexivity in late modernity (1992) serves herenot only as a theoretical point of departure, but also as a point of discussion itself. This latteris a consequence of the results of the study confirming some general trends that Beck pointsto, but also revising some of them in addressing the issue that individual reflexivity needs tobe related to one’s experiences of, in this case, Parkinson’s disease. My argument that one’srelation to the disease fundamentally affects one’s motives and effects of ethical reflectionserves to nuance the generalizability of Beck’s theory.

Just like the first theories in physics viewed the atoms as independent and surrounded by a void, our boides' microscopic constituents are often portrayed as disconnected from the body as an unified organism, and from its cultural and social contexts. In The Atomized Body the authors examine the relations between culture, society and bioscientific research and show how our bodies' singularized particles indeed still are socially and culturally embedded. In today's medicine, the biosciences are entangled with state power, commercialism, and cultural ideas and expectations, as well as with the hopes and fears of individuals. Therefore, biomedicine and biotechnology also reshape our perceptions of selfhood and life. From multidiscplinary perspectived, including visual studies, theology, and ethnology, this volume discusses the biosciences and the atomized body in their social, cultural and philosophical contexts.