Pain affects people’s quality of life and is an important issue for equal health. How professions within social work deal with other people’s pain is therefore a central question. Previous studies on pain among groups unable to self-report have mainly focused on the role of the nurse (Hemsley, Balandin & Worrall, 2012; Martin, Connor-Fenelon & Lyons, 2012). A few studies have focused on housing, but knowledge of the Swedish context is lacking. This literature review presents the findings of previous research on professionals working closely with people with disabilities who, due to their disabilities, have difficulties communicating pain. Such disabilities may include intellectual disabilities, autism spectrum disorder, and severe and persistent intellectual disability following brain injury in adulthood or mental disability not due to normal ageing.

The aim of this scoping review is to summarize and communicate the state of the art and the results of earlier studies. It will also identify gaps in the existing research on – in this case, the application of – pain detection methods in people with disabilities who have communication difficulties in user-centred work. The report is based on a scoping review (Arksey & O'Malley, 2005). Four databases were searched: PsycInfo, Cinahl, Swepub and Sociological abstracts, between the years 2010-2023. Only peer-reviewed articles were included. The results of the included studies are presented under themes corresponding to the research questions of the report:

• Pain occurrence and expression

• Pain recognition - experiences and practitioners

• Tested or validated pain assessment tools

• Challenges and recommendations in clinic and practice and

• Future technical solutions.

The scoping review shows that there is no validated tool that covers multiple disabilities/ diagnoses. It also shows that several of the tools used require medical training and are time and resource consuming. Further, the results show that there is a lack of training and knowledge about pain among staff and that they often rely primarily on verbal and explicit communication of pain, even when users have limited communication skills. Increased knowledge of pain physiology is therefore essential for those working to support and care for people with disabilities that result in reduced communication skills. Studies on different types of disabilities are missing as most studies focus on intellectual disabilities. Also, studies from a Swedish context are few.

Pain affects people’s quality of life, and is an important issue for social justice in equal health. This paper will present the preliminary analysis on professionals working closely with people with disabilities who, due to their disabilities, have difficulties communicating pain. Such disabilities may include intellectual disabilities, disabilities on the autism spectrum, and severe and persistent intellectual disability following brain injury in adulthood or mental disability not due to normal ageing. Previous studies on pain among groups unable to self-report have mainly focused on the role of the nurse (see for example Hemsley, Balandin & Worrall, 2012; Martin, Connor-Fenelon & Lyons, 2012). Few studies have focused on housing, and knowledge of the Swedish welfare context is lacking. By conducting interviews with professionals working in LSS-housing for people with, for example, intellectual disabilities and disabilities within the autism spectrum, this study explores how the professionals’ work to detect and interpret pain in the residents who have difficulty communicating pain. Through a critical disability perspective we analyses and identifies what barriers and what resources exists, what models that are currently used and what strategies the professionals have, as well as discusses how these insights can engender social justice in health.

Denna artikel analyserar rapporten ”A Disability Rights Analysis of Genetic Technologies: Report on a National Convening of Disability Rights Leaders” (Generations Ahead 2009) för att undersöka perspektiv på prevention av genetiska funktionsnedsättningar. Rapporten betraktas som ett alternativt samtal jämfört med de offentliga samtal om prevention och genteknik som förs i exempelvis Sverige. Inom funktionshinderforskningen är preventionens sociala konsekvenser en pågående diskussion, och det argumenteras för att en ny form av eugenik har vuxit fram. Eugeniken är i dag ett individprojekt där ny genteknik, såsom fosterdiagnostik, erbjuds blivande familjer som sedan måste fatta beslut om graviditeten ska avbrytas eller inte. I relation till dessa förändringar argumenteras i artikeln för att det är centralt att hitta andra sätt att resonera kring de sociala fenomen som preventionen skapar.

This article analyses the report “A Disability Rights Analysis of Genetic Technologies: Report on a National Convening of Disability Rights Leaders” (Generations Ahead 2009) to examine perspectives on prevention of gene-tic disabilities. The text is considered an alternative conversation compared to public conversations on preventive use of genetic technologies, such as those taking place in Sweden. Within disability research, the social conse-quences of prevention is an ongoing discussion, with arguments suggesting that a new form of eugenics has emerged. Today, eugenics is an individual project where new genetic technologies, such as prenatal screening, are of-fered to prospective families who must then decide whether to terminate the pregnancy or not. This article argues that it is central to find other ways to reason about the social phenomena that prevention creates.  

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.

This paper is based on a three-year project recently started in Sweden. In this project we will investigate how “Responsible research and innovation” (RRI) is (re)produced at the intersection between the laboratory and the surrounding society, and between the researchers' everyday work practices and society's discourses on modern biomedicine. The two technologies studied in the project are CRISPR technology and neuro-transplantation with stem cells. A question central to the project, is to study the biomedical researchers' everyday life and how they "respond" to the uncertain and unpredictable consequences that exist in the research on the biomodifying technologies. What ethical issues are raised in relation to different bio-modifying technologies? This is a question that relate to the panel theme and we will therefore focus our paper on the discourses in the Nordic countries – manly Sweden and Denmark - and what modes of de/politization we can find concerning editing genome technologies. We will do this by focusing on laboratories that recently have started to work with, or are in the start-up phase for using CRISPR technology. Drawing on the issues from the panel abstract, we want to raise questions like: What kinds of new social control, hierarchies, exclusion and domination can we see in the laboratories? What kind of care and social inclusion are discussed or practised there?

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.