Caring through things at a distance: Intimacy and presence in teletherapy assemblages.

The COVID-19 crisis in the UK precipitated a sharp rise in the use of remote technologies to provide therapy during the lockdown. With mental health care services migrating to devices and video-conferencing platforms, nearly all forms of therapy had become 'teletherapy'. Drawing on interviews with UK-based practitioners, this paper explores how existing ideas of intimacy and presence are challenged when care is practiced at a distance. Against the background of concerns that remote technologies erode intimacy and degrade physical presence, the argument is made that presence, distance, intimacy and control are reconfigured within mediated therapy. Analysis of practitioners' experiences of teletherapy examines the material and expressive components of 'assemblages' characterised by their stable and fluid properties. Two assemblages are identified and discussed: emergency care assemblages and assemblages of intimacy, both of which are aligned with specific sectors of mental health care. Evidence that therapeutic encounters are constrained by technologies are considered alongside the material conditions and inequalities of vulnerable groups, while assemblages with relatively stable properties are generative of new ways of relating to clients online. These findings highlight the material and expressive components of human and nonhuman assemblages that create new kinds of affective relations in distanced care.

Genetic Counselling for Psychiatric Disorders: Accounts of Psychiatric Health Professionals in the United Kingdom.

Genetic counselling is not routinely offered for psychiatric disorders in the United Kingdom through NHS regional clinical genetics departments. However, recent genomic advances, confirming a genetic contribution to mental illness, are anticipated to increase demand for psychiatric genetic counselling. This is the first study of its kind to employ qualitative methods of research to explore accounts of psychiatric health professionals regarding the prospects for genetic counselling services within clinical psychiatry in the UK. Data were collected from 32 questionnaire participants, and 9 subsequent interviewees. Data analysis revealed that although participants had not encountered patients explicitly demanding psychiatric genetic counselling, psychiatric health professionals believe that such a service would be useful and desirable. Genomic advances may have significant implications for genetic counselling in clinical psychiatry even if these discoveries do not lead to genetic testing. Psychiatric health professionals describe clinical genetics as a skilled profession capable of combining complex risk communication with much needed psychosocial support. However, participants noted barriers to the implementation of psychiatric genetic counselling services including, but not limited to, the complexities of uncertainty in psychiatric diagnoses, patient engagement and ethical concerns regarding limited capacity.

Can Genomics Remove Uncertainty from Adoption? Social Workers' and Medical Advisors' Accounts of Genetic Testing.

Genetic testing is controversial in adoption with professionals taking different positions on whether children should be protected from genetic information or whether it can be used to assist adoption. In this article, we argue that advances in 'genome-wide' testing add further complications to these debates. Although next-generation sequencing (NGS) and microarray-based technologies can offer high-quality molecular diagnoses for a variety of conditions, they also increase the burden of interpretation. For these reasons, adoption professionals will need to understand the relevance and complexity of biomedical information. Our study explores the accounts of social workers' and medical advisors' knowledge and reasoning about genetic testing in adoption. Twenty participants, including social workers, managers, medical advisors and paediatricians, were recruited from adoption services in England and Wales. A key finding revealed that medical professionals reported increasing pressure to test children prior to adoption, whilst social workers justified testing on the basis that it reduced uncertainty and therefore assisted adoption. Professionals' accounts of genetic testing suggest that social workers may not be aware of the potential indeterminacy of microarray and NGS technologies. This has important implications for adoption because increases in genomic uncertainty can stigmatise children and disadvantage their prospects for adoption.

The ethics of disclosing genetic diagnosis for Alzheimer's disease: do we need a new paradigm?

INTRODUCTION OR BACKGROUND: Genetic testing for rare Mendelian disorders represents the dominant ethical paradigm in clinical and professional practice. Predictive testing for Huntington's disease is the model against which other kinds of genetic testing are evaluated, including testing for Alzheimer's disease. SOURCES OF DATA: This paper retraces the historical development of ethical reasoning in relation to predictive genetic testing and reviews a range of ethical, sociological and psychological literature from the 1970s to the present. AREAS OF AGREEMENT: In the past, ethical reasoning has embodied a distinct style whereby normative principles are developed from a dominant disease exemplar. AREAS OF CONTROVERSY: This reductionist approach to formulating ethical frameworks breaks down in the case of disease susceptibility. GROWING POINTS: Recent developments in the genetics of Alzheimer's disease present a significant case for reconsidering the ethics of disclosing risk for common complex diseases. Disclosing the results of susceptibility testing for Alzheimer's disease has different social, psychological and behavioural consequences. Furthermore, what genetic susceptibility means to individuals and their families is diffuse and often mitigated by other factors and concerns. AREAS TIMELY FOR DEVELOPING RESEARCH: The ethics of disclosing a genetic diagnosis of susceptibility is contingent on whether professionals accept that probabilistic risk information is in fact 'diagnostic' and it will rely substantially on empirical evidence of how people actually perceive, recall and communicate complex risk information.

Complexity and accountability: the witches' brew of psychiatric genetics.

This paper examines the role of complexity in descriptions of the aetiology of common psychiatric disorders. While scientists attest to the discovery of an underlying reality of complex inheritance--the so-called 'witches' brew' of genetic and non-genetic factors--we argue that 'complexity' also performs rhetorical work. In our analysis of scientific review papers (1999-2008), we find a relatively stable genre of accountability in which descriptions of complexity appear to neutralize past failures by incorporating different and sometimes competing methodological perspectives. We identify two temporal strategies: retrospective accounting, which reconstructs a history of psychiatric genetics that deals with the recent failures, citing earlier twin studies as proof of the heritability of common psychiatric disorders; and prospective accounting, which engages in the careful reconstruction of expectations by balancing methodological limitations with moderated optimism. Together, these strategies produce a simple-to-complex narrative that belies the ambivalent nature of complexity. We show that the rhetorical construction of complexity in scientific review papers is oriented to bridging disciplinary boundaries, marshalling new resources and reconstructing expectations that justify delays in gene discovery and risk prediction.

Professionals' accounts of genetic testing in adoption: a qualitative study.

OBJECTIVE: To explore social workers' and medical advisors' accounts of genetic testing in adoption. METHODS: A qualitative study using semi-structured interviews to gather in-depth accounts of retrospective cases. Data were analysed thematically to identify professionals' knowledge and expectations. RESULTS: Twenty professionals working in adoption services (including 8 medical advisors and 12 social workers) participated in this study. Social workers adopted an essentialist (single-gene) model to discuss genetic testing in relation to past cases. They assumed that testing was a generic procedure for detecting the presence or absence of a specific aetiology, the results of which were believed to be definitive and mutually exclusive. By contrast, medical advisors were circumspect and agnostic about the meaning of results, especially in relation to chromosomal microarray testing. Whereas social workers believed that genetic testing provided clarity in assessment and therefore assisted adoption, medical advisors emphasised the uncertainties of testing and the possibility that prospective adopters might be misled. Medical advisors also reported inappropriate requests to test children where there was a family history of a genetic condition, or to confirm or exclude a diagnosis of fetal alcohol spectrum disorder in children presenting with non-specific dysmorphic features. CONCLUSION: Recent advances in genetic technologies are changing the ways in which professionals understand and tolerate uncertainty in adoption. Social workers and medical advisors have different understandings and expectations about the clinical utility of genetic testing. These findings have implications for social work training about genetic testing and enabling effective communication between professional groups.

Professional ambivalence: accounts of ethical practice in childhood genetic testing.

Childhood genetic testing raises complex ethical and moral dilemmas for both families and professionals. In the family sphere, the role of communication is a key aspect in the transmission of 'genetic responsibility' between adults and children. In the professional sphere, genetic responsibility is an interactional accomplishment emerging from the sometimes competing views over what constitutes the 'best interests' of the child in relation to parental preferences on the one hand, and professional judgements on the other. In the present paper we extend our previous research into parental accounts of childhood genetic testing and explore the ethical accounts of professionals in research interviews. Interviews (n = 20) were conducted with professional practitioners involved in the genetic diagnosis and management of children and their families. We first identify four inter-related themes-juxtaposition of parental rights vis-à-vis child's autonomy, elicitation of the child's autonomy, avoidance of parental responsibility and recognition of professional uncertainty. Then, using Rhetorical Discourse Analysis, we examine the range of discourse devices through which ethical accounts are situationally illustrated: contrast, reported speech, constructed dialogue, character and event work. An overarching device in these ethical accounts is the use of extreme case scenarios, which reconstruct dilemmas as justifications of professional conduct. While acknowledging ambivalence, our analysis suggests that professional judgement is not a simple matter of implementing ethical principles but rather of managing the practical conditions and consequences of interactions with parents and children. We conclude that more attention is needed to understand the way professional practitioners formulate judgements about ethical practice.

Managing self-responsibility through other-oriented blame: family accounts of genetic testing.

'Genetic responsibility' has emerged as a key notion for understanding how genetic risk reshapes patterns of choice, identification and obligation within families. Where previous research has examined the difficulties of managing responsibility for genetic testing and disclosure of the testing process and results, there is little work that examines these themes when accounts of genetic responsibility involve blame. In this paper, we explore how forms of responsible selfhood are managed through accounts of other-oriented blame in the family sphere. Interviews (n=20) were conducted in the United Kingdom with parents whose genetic condition may have consequences for other family members. Using rhetorical discourse analysis we show that a key discursive resource for managing blame and responsibility is the use of contrast -- via constructed dialogue, character/event work and extreme case formulation -- to either endorse or contest versions of responsible/moral selfhood. We conclude that claims of personal responsibility manifest in open disclosure of genetic information often entail the blaming of others within the family. By extension, blaming others has moral and relational significance when competing views of genetic responsibility are at stake and when genetic understandings are incongruent.

The micropolitics of responsibility vis-à-vis autonomy: parental accounts of childhood genetic testing and (non)disclosure.

Genetic testing and (non)disclosure of genetic information present ethical and moral dilemmas for the management of parental responsibility vis-à-vis the child's autonomy. Ethical guidelines aimed at professionals currently seek to defer childhood testing where there is no clear medical or psychosocial benefit. This version of autonomy is derived from a bioethical paradigm which brackets the individual rights and capacities of the child. In this paper we focus on situated parental accounts of responsibility/autonomy to understand the complex forms of relational work -i.e. the micropolitics of balancing rights and responsibilities - involving a range of inherited genetic disorders. Interviews (n= 20) were conducted with parents whose genetic condition may have had consequences for their children. Using rhetorical discourse analysis, we show how parents draw upon a number of rhetorical/discoursal devices to produce accounts where genetic responsibility is actually or potentially transmitted to the child. We identify three kinds of accounting practice: (1) aligned responsibility; (2) deferred responsibility; and (3) misaligned responsibility. Each of these practices demonstrates how parents position themselves responsibly by foregrounding figures and events onto which the child's autonomy is selectively mapped. Rather than simple representations, we regard these accounts as complex moral performances that seek alignment with broader bioethical discourses.

After geneticization.

The concept of geneticization belongs to a style of thinking within the social sciences that refers to wide-ranging processes and consequences of genetic knowledge. Lippman's original use of the term was political, anticipating the onerous consequences of genetic reductionism and determinism, while more recent engagements emphasise the productivity and heterogeneity of genetic concepts, practices and technologies. This paper reconstructs the geneticization concept, tracing it back to early political critiques of medicine. The argument is made that geneticization belongs to a style of constructionist thinking that obscures and exaggerates the essentializing effects of genetic knowledge. Following Hacking's advice, we need a more literal sense of construction in terms of 'assembly' to give a clearer account of the relationship between processes and products. Using the 'assemblage' concept to explore the social ontology of genetics, the paper reviews three areas of the empirical literature on geneticization - disease classification, clinical practice and biosociality - to show that a new style of thinking has appeared within the social sciences. In the final assessment, the conditions that gave rise to geneticization are now obsolete. While it may serve as a useful ritual of debate, conceptually geneticization offers a limited account of the heterogeneity of socio-technical change.

A naïve bayes approach to classifying topics in suicide notes.

The authors present a system developed for the 2011 i2b2 Challenge on Sentiment Classification, whose aim was to automatically classify sentences in suicide notes using a scheme of 15 topics, mostly emotions. The system combines machine learning with a rule-based methodology. The features used to represent a problem were based on lexico-semantic properties of individual words in addition to regular expressions used to represent patterns of word usage across different topics. A naïve Bayes classifier was trained using the features extracted from the training data consisting of 600 manually annotated suicide notes. Classification was then performed using the naïve Bayes classifier as well as a set of pattern-matching rules. The classification performance was evaluated against a manually prepared gold standard consisting of 300 suicide notes, in which 1,091 out of a total of 2,037 sentences were associated with a total of 1,272 annotations. The competing systems were ranked using the micro-averaged F-measure as the primary evaluation metric. Our system achieved the F-measure of 53% (with 55% precision and 52% recall), which was significantly better than the average performance of 48.75% achieved by the 26 participating teams.

Promissory accounts of personalisation in the commercialisation of genomic knowledge.

As part of personalised medicine emerging from the human genomics revolution, many websites now offer direct-to-consumer genetic testing. Here, we examine three personal genomics companies--Navigenics, deCODEme and 23andMe--each of which represents contrasting registers of 'personalisation'. We identify three distinctive registers in these websites: a paternalistic (medical) register; a translational (scientific) register and a democratic (consumerist) register. We explore in detail the rhetorical and discourse devices employed in these websites to assess how personalised healthcare is promised to the public. Promising information that will empower prevention of common complex diseases and ensure better quality of life is conflated with promising greater access to personal information. The presence and absence of scientific legitimacy is related to concerns about accuracy and validity on the one side, and fears of paternalism and elitism on the other. Nevertheless, a common strategy uniting these different styles of personalisation is consumer empowerment. Finally, we consider the tension between the drive of translational medicine to make human genomic research practically relevant, and the intrinsic uncertainties of scientific research and show how, in the commercial domain, future risks are transformed into discourses of promise by concealing these uncertainties.