Making “healthy” families: the biomedicalization of kin marriage in contemporary Turkey

This thesis focuses on the impact of reproductive genetic health services on the making of “healthy” families in Turkey by exploring how kin marriage is being conceptualized, managed, and negotiated as a genetic risk factor and reproductive health concern within intersecting biomedical and genetic spaces in contemporary Turkey. It asks how notions of “healthy” reproduction and “healthy” family making inform the health policies, discourses and practices surrounding the biomedical management of kin marriage, and how couples practicing kin marriage respond to and negotiate concepts of “risky reproduction” and “genetic risk” in their experiences with genetic services. Although kin marriages as close as first cousin marriage are legally accepted and comparatively frequent in Turkey, these marriage patterns have long occupied a contested position within Turkey’s society. Modernist nationalist discourse depicted kin marriages as a remnant of the Ottoman past signifying the lingering presence of internal “non-modernity”, “traditionalism” and “Oriental” otherness. These existing legacies of otherization and stigmatization of kin marriage have gained a new biomedical quality with the emerging re-conceptualization of kin marriage as a reproductive health problem following the spread and routinization of reproductive genetic health services in Turkey from the 1980s onwards. This “biomedicalization” (Clarke et al. 2003) of kin marriage has shifted the question of how future citizens should be brought up in a socially and politically desirable familial environment to the question of how these future citizens should be conceived and born in the first place. Based on a critical reading of relevant government issued texts on reproductive health, family making and kin marriage, 19 qualitative interviews with medico-genetic professionals as well as 18 qualitative interviews with lay participants practicing kin marriage, and observations during a two-and-a-half months stay at a public genetics clinic in Istanbul, this thesis explores the (bio)political implications of this biomedicalization process

Modelling causality in law = Modélisation de la causalité en droit

L'intérêt en apprentissage machine pour étudier la causalité s'est considérablement accru ces dernières années. Cette approche est cependant encore peu répandue dans le domaine de l’intelligence artificielle (IA) et du droit. Elle devrait l'être. L'approche associative actuelle d’apprentissage machine révèle certaines limites que l'analyse causale peut surmonter. Cette thèse vise à découvrir si les modèles causaux peuvent être utilisés en IA et droit. Nous procédons à une brève revue sur le raisonnement et la causalité en science et en droit. Traditionnellement, les cadres normatifs du raisonnement étaient la logique et la rationalité, mais la théorie duale démontre que la prise de décision humaine dépend de nombreux facteurs qui défient la rationalité. À ce titre, des statistiques et des probabilités étaient nécessaires pour améliorer la prédiction des résultats décisionnels. En droit, les cadres de causalité ont été définis par des décisions historiques, mais la plupart des modèles d’aujourd’hui de l'IA et droit n'impliquent pas d'analyse causale. Nous fournissons un bref résumé de ces modèles, puis appliquons le langage structurel de Judea Pearl et les définitions Halpern-Pearl de la causalité pour modéliser quelques décisions juridiques canadiennes qui impliquent la causalité. Les résultats suggèrent qu'il est non seulement possible d'utiliser des modèles de causalité formels pour décrire les décisions juridiques, mais également utile car un schéma uniforme élimine l'ambiguïté. De plus, les cadres de causalité sont utiles pour promouvoir la responsabilisation et minimiser les biais.The machine learning community’s interest in causality has significantly increased in recent years. This trend has not yet been made popular in AI & Law. It should be because the current associative ML approach reveals certain limitations that causal analysis may overcome. This research paper aims to discover whether formal causal frameworks can be used in AI & Law. We proceed with a brief account of scholarship on reasoning and causality in science and in law. Traditionally, normative frameworks for reasoning have been logic and rationality, but the dual theory has shown that human decision-making depends on many factors that defy rationality. As such, statistics and probability were called for to improve the prediction of decisional outcomes. In law, causal frameworks have been defined by landmark decisions but most of the AI & Law models today do not involve causal analysis. We provide a brief summary of these models and then attempt to apply Judea Pearl’s structural language and the Halpern-Pearl definitions of actual causality to model a few Canadian legal decisions that involve causality. Results suggest that it is not only possible to use formal causal models to describe legal decisions, but also useful because a uniform schema eliminates ambiguity. Also, causal frameworks are helpful in promoting accountability and minimizing biases

Scientific realism and phenomenology through the case study of autism

In this thesis, I propose a radical reframing of the analytic scientific realism debate via the phenomenological concept of the life-world. I provide motivation for examining science’s situatedness by interrogating the observable aspects of the world. In so doing, I propose to drop any notions of ecumenical truth and reality in the frame of the debate. The case study of autism spectrum conditions (ASCs) is explored to demonstrate what this suggested reframing implies for scientific practice. I offer that the best construal of the observables is the concept of the life-world (Edmund Husserl’s lebenswelt) from continental phenomenology. I perform a series of analytic tweaks on the concept and define it, for the frame of this dissertation, to be the world of immediate – yet theory-laden and prism-mediated – experience as cashed out by a subject’s perceiving capacities. The main improvement of the life-world to traditional analytic construals of the observables is that it captures extra-linguistic elements, allowing us to interrogate these crucial facets of science that are not language- and theory-based strictu sensu. Following I highlight the life-world’s pluralistic dimensions. Theoretically, I do this by defending conceptual scheme pluralism against certain tendencies in the analytic philosophy of language, and then apply this defence to life-worlds. Turning to extant cases of life-world difference, I investigate the case study of autism spectrum conditions. I argue that what this case brings to the fore is first our being compelled to recognise the autistic life-world as ‘real and true’ in the way we take the neurologically typical life-world to be and, second, that autism spectrum conditions treatment should be oriented towards this life-world, in the sense of attempting to maximize happiness and well-being in its own terms. Unfortunately, this is found to be in stark contrast with the extant ASC-related treatment situation. Finally, I claim that we should philosophically be haunted less by any claims of ecumenical Truth and Reality and related, somewhat stale metaphysical issues typically associated with the debate. Rather, it is both more philosophically interesting and humanitarianly urgent to interrogate how what a science takes to be true shapes the practice itself and how it affects human lives associated with it. Theoretically, my philosophical position abides first and foremost by life-world incorrigibility and pluralism and is thus appropriately named pluralistic incorrigible realism (PIR). ‘True’ is here taken to cash out what is incorrigible for a perceiving subject, but whatever notion of truth may arise herein is only in the form of a (subjective or intersubjective) admittance within the confines of a life-world

The Pandemic of Argumentation

This open access book addresses communicative aspects of the current COVID-19 pandemic as well as the epidemic of misinformation from the perspective of argumentation theory. Argumentation theory is uniquely placed to understand and account for the challenges of public reason as expressed through argumentative discourse. The book thus focuses on the extent to which the forms, norms and functions of public argumentation have changed in the face of the COVID-19 pandemic. This question is investigated along the three main research lines of the COST Action project CA 17132: European network for Argumentation and Public PoLicY analysis (APPLY): descriptive, normative, and prescriptive. The volume offers a broad range of contributions which treat argumentative phenomena that are directly related to the changes in public discourse in the wake of the outburst of COVID-19. The volume additionally places particular emphasis on expert argumentation, given (i) the importance expert discourse has had over the last two years, and (ii) the challenges that expert argumentation has faced in the public sphere as a result of scientific uncertainty and widespread misinformation. Contributions are divided into three groups, which (i) examine various features and aspects of public and institutional discourse about the COVID-19 pandemic, (ii) scrutinize the way health policies have been discussed, debated, attacked and defended in the public sphere, and (iii) consider a range of proposals meant to improve the quality of public discourse, and public deliberation in particular, in such a way that concrete proposals for argumentative literacy will be brought to light. Overall, this volume constitutes a timely inquiry into all things argumentative in pandemic discourse. This volume is of interest to a broad readership including philosophers, linguists, communication and legal scholars, and members of the wider public who seek to better understand the discourse surrounding communicative phenomena in times of crisis. COST (European Cooperation in Science and Technology) is a funding organisation for research and innovation networks. For more information: www.cost.e

Learning evolution through socioscientific issues

No abstract available.publishe

The Pandemic of Argumentation

This open access book addresses communicative aspects of the current COVID-19 pandemic as well as the epidemic of misinformation from the perspective of argumentation theory. Argumentation theory is uniquely placed to understand and account for the challenges of public reason as expressed through argumentative discourse. The book thus focuses on the extent to which the forms, norms and functions of public argumentation have changed in the face of the COVID-19 pandemic. This question is investigated along the three main research lines of the COST Action project CA 17132: European network for Argumentation and Public PoLicY analysis (APPLY): descriptive, normative, and prescriptive. The volume offers a broad range of contributions which treat argumentative phenomena that are directly related to the changes in public discourse in the wake of the outburst of COVID-19. The volume additionally places particular emphasis on expert argumentation, given (i) the importance expert discourse has had over the last two years, and (ii) the challenges that expert argumentation has faced in the public sphere as a result of scientific uncertainty and widespread misinformation. Contributions are divided into three groups, which (i) examine various features and aspects of public and institutional discourse about the COVID-19 pandemic, (ii) scrutinize the way health policies have been discussed, debated, attacked and defended in the public sphere, and (iii) consider a range of proposals meant to improve the quality of public discourse, and public deliberation in particular, in such a way that concrete proposals for argumentative literacy will be brought to light. Overall, this volume constitutes a timely inquiry into all things argumentative in pandemic discourse. This volume is of interest to a broad readership including philosophers, linguists, communication and legal scholars, and members of the wider public who seek to better understand the discourse surrounding communicative phenomena in times of crisis. COST (European Cooperation in Science and Technology) is a funding organisation for research and innovation networks. For more information: www.cost.e

The public sphere according to UK stem cell scientists

In this thesis the concept of social representations is made relevant to the study of the ‘public sphere’ according to scientists. This is elaborated by the re-examination of the notion of a ‘consensual’ and a ‘reified universe’ substantiating a more sociopsychological approach in the study of relevant phenomena. Two processes generate social representations of the public: anchoring and objectification. The empirical study investigates the scientists’ views of the public sphere, in relation to public perceptions, media coverage and the regulation of cloning technology. Elite media coverage of the stem cell debate and conversations with stem cell scientists are systematically analysed with multiple methods. Findings are based on 461 news articles that appeared in Nature and Science between 1997 and 2005 and on interviews with 18 U.K based stem cell researchers conducted between February and October 2005. The analysis compares the debate before and after the ‘stem cell war’ of 2002, and typifies a high tension in representing the public sphere, elaborated in metaphors and prevailing arguments. Central elements of the representation assume a strong disassociation of science from the public sphere; peripheral elements operate with a degree of blurring of those same boundaries, which recognises a common project. This representation, while being expressive of its context of production, constitutes a functional response to it

Personalized medicine : legal and ethical challenges

The printed version of this title will be available on Unigrafia online store: https://shop.unigrafia.fi/?lang=enThe paradigm of personalized medicine is an emerging topic, triggering some specific legal and ethical challenges as regards data collection, sharing and use, informed consent, privacy and public trust, and the changing status of patients and social equality. These legislative developments and challenges have been discussed in light of the Finnish and the common-European experiences. During recent years, the Finnish legislative processes aiming at generating ‘innovation-friendly’ legislation for scientific research purposes as well as integrating genomic research results into the clinical setting have been heavily challenged by rapid developments in technology and medicine. In particular, there is a need to pursue the right balance between scientific and commercial interests, public health, and individual rights. We aim at providing insights into the legislative processes surrounding personalized medicine with a special focus on how the freedom of science, equitable access to healthcare, public health, and commercial issues that must be balanced with individual rights as expressed in the EU Charter and the Council of Europe’s Oviedo Convention on Human Rights and Biomedicine. A wide spectrum of different types of challenges arises; among other things, there is a need to discuss the Finnish and international legislation of genome testing in terms of consent on behalf of a young child. Also the legal and ethical aspects of disruptive gene-editing technologies need to be analysed: How should we interpret the concept of human dignity in the bioethical discussion surrounding germline editing? Furthermore, an overview of ongoing initiatives to accelerate the market-entry of advanced therapy medicinal products will be provided. The European regulators are now taking measures to create a facilitative regulatory environment that encourages innovation, protects public health, and enables timely patient access to innovative, new therapies whilst ensuring patient safety. The role of risk-proportionate adaptations to clinical trials and GMP manufacture along with the European Medicines Agency’s early-access incentives and initiatives are presented as potential facilitators of market entry. Furthermore, in this context, the role of conditional reimbursement schemes and risk sharing-agreements is also discussed in light of the newest Finnish experiences. Furthermore, in terms of patent law, some specific challenges arise; in this anthology, attention is paid to the recent transatlantic legal dispute over a patent concerning the use of the CRISPR/Cas9 system in eukaryotic cells. Finally, some considerations beyond legal or ethical aspects of personalised medicine are presented. How can machine learning be used to support personalized care that addresses the patient’s needs