京都大学 / 0048 / 新制・論文博士 / 博士(医学) / 乙第13222号 / 論医博第2169号 / 新制||医||1033(附属図書館) / 京都大学大学院医学研究科医学専攻 / (主査)教授 中山 健夫, 教授 松村 由美, 教授 森田 智視 / 学位規則第4条第2項該当 / Doctor of Medical Science / Kyoto University / DFAM

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This study examines how the concepts of biomedical ethics are considered in Islam and how historical Islamic medical scholars treated the concept of ethics in their practice of medicine. Moreover, this research explores the principle of autonomy in biomedical ethics as a factor in Islamic practice of medicine. The issue of autonomy in medical practice is an important topic of discussion requiring examination of the methods of its adaptation and application in Muslim-majority countries. The value and significance of this topic continues at a global level, involving Muslim communities in Non-Muslim countries experiencing religious and social diversity. The fieldwork of this study was conducted in Turkey, Jordan and Gaza Strip, Palestine, investigating the subject matter with practitioners in health care sectors as well as with leading academics, researchers, non-government organizations and policymakers. The results indicate that the principle of autonomy is not fully implemented in the three countries from an Islamic perspective. / 博士(グローバル社会研究) / Doctor of Philosophy in Global Society Studies / 同志社大学 / Doshisha University

« Es-tu d’accord ? » En contexte numérique, cette question appelle un oui ou un non au traitement annoncé de nos données personnelles par une organisation; elle demande ainsi à l’utilisateur son consentement. Les agents conversationnels sont des systèmes de dialogue (ou bots) qui utilisent de nombreuses données personnelles pour parler avec des humains par interface textuelle (chatbot) ou vocale (assistant vocal, parfois appelé voicebot). Par une ethnographie au sein d’une start-up qui développe ce type d’agents, cette thèse explore comment le consentement se tisse dans les pratiques de design de cette organisation. Cette thèse se demande : que peut être une « bonne expérience » de consentement avec un agent conversationnel ? Elle s’ouvre par un chemin tracé au travers de littératures en design d’expérience conversationnelle et en éthique sur le consentement. Tandis qu’une bonne expérience conversationnelle est censée être fluide et agréable, celle du consentement demande des interruptions parfois inconfortables pour être suffisamment éclairé : comment ces deux versions de « bonne expérience » peuvent-elles être réunies sans que l’une ne blesse ou n’invalide l’autre ? Face aux nombreuses limites qui rendent le consentement numérique bien difficile à être valable, la tentation de le laisser de côté est palpable. Pourtant, son horizon éthique de respect vaut la peine d'en prendre soin. Par une perspective qui envisage le consentement comme un matter of caring, cette thèse développe ensuite un cadre théorique qui invite à prendre soin des situations de consentement. Il dote l'approche ventriloque, qui étudie la constitution de la réalité par la communication, d’une éthique du care : avec le concept de matter of caring, il s’agit de prendre soin de certaines préoccupations (matters of concern) pour améliorer des situations de consentement. En se faisant matter of caring, le consentement trouve une façon de n'être plus négligé comme une préoccupation qui ne parvient pas à compter, mais de participer à un changement dans les habitudes d'interaction. Cette participation au changement est également au cœur des pratiques ethnographiques qui constituent cette thèse : à partir de mon expérience comme participante active plutôt que de simple observatrice dans la startup mentionnée plus haut, j’invite à comprendre la pratique réflexive ethnographique par une approche relationnelle où l’ethnographe peut être activement engagée dans la constitution de l’organisation qu’elle étudie. C’est par cet engagement que s’est constitué le matériel de terrain que j’analyse tout au long de la thèse. Plus précisément, le dernier chapitre plonge dans mon terrain et ses tensions pour concevoir une bonne expérience de conversation et de consentement. En résistant à la tentation de laisser le consentement perdre de son importance, je montre que s’y accrocher comme un matter of caring amène à se concentrer sur les conditions dans lesquelles l’organisation demande le consentement : comment prévoit-on de traiter les informations personnelles et comment conçoit-on l’interaction par laquelle le bot demandera leur consentement à ses utilisateurs. Cette histoire n’est pas couronnée de succès mais dévoile plutôt une certaine vulnérabilité. Ainsi, cette thèse ne propose pas un modèle de consentement, ni des directives de design éthique d'un agent conversationnel. Elle s'attarde plutôt sur l'importance des conditions à permettre pour faire de la place aux interactions de consentement. Plutôt que de figer le consentement dans un état contraint de formalité, elle invite à penser le consentement comme une conversation, avec du respect et de l'épanouissement à l’horizon. / “Do you agree?” In the digital realm, this question calls for a yes or no answer to the processing of our personal data by an organization; that is, it asks for the user’s consent. Conversational agents are dialogue systems (or bots) that use many personal data to talk with humans through a textual interface (chatbot) or voice interface (voice assistant, sometimes called “voicebot”). Through an ethnography within a start-up that develops these kinds of agents, this doctoral dissertation explores the weaving of consent into this organization’s design practices. Thus, this dissertation asks: What does a “good experience” of consent with a conversational agent look like? It starts by reviewing the literature on design of conversational experiences and in the ethics of consent. While a good conversational experience is supposed to be smooth and enjoyable, the consent experience requires some interruptions to be sufficiently informed, which can be uncomfortable. So how can these two versions of a “good experience” be brought together without one hurting or invalidating the other? Faced with the many limitations for meaningful consent in a digital context, the temptation to put consent aside is palpable, yet its ethical horizon of respect is worth caring for. Then, with a perspective that views consent in terms of a matter of caring, this dissertation develops a theoretical framework that enables us to explore how people can care for consent situations. Centered on the concept of matter of caring, this framework enriches a ventriloquial approach to the study of the communicative constitution of reality with an ethics of care; it focuses attention on how certain matters of concern can be cared for in order to improve consent situations. By becoming a matter of caring, consent can no longer be neglected as a concern that fails to count; it rather participates in changing how human beings interact with each other. Participating in the bringing about of this change is at the core of the ethnographic methods that constitute this dissertation: Based on my experience with becoming an active participant in the mentioned start-up, rather than a mere participant observant, I explain how ethnographic reflexive practice can be viewed relationally; that is, how an ethnographer can be actively engaged in the constitution of the organization she is studying. This engagement shaped the fieldwork materials I analyze in-depth throughout the dissertation. More specifically, the last chapter of the dissertation delves into my fieldwork on the mentioned tension between designing a good conversational and consent experience. Resisting the temptation to let consent fade away, I show that holding on to it as a matter of caring makes us focus on the conditions under which the organization I studied asks for consent: how it plans to process personal information and how it designs the interaction through which the bot asks for consent from its users. This is not a success story, but rather a story of vulnerability. Thus, this dissertation does not propose a model for consent, nor does it suggest ethical design guidelines for a conversational agent. Instead, it highlights the importance of providing conditions to enable interactions in which consent becomes a matter of caring. Rather than freezing consent in a constrained state of formality, it invites us to think of consent as a conversation, with respect and flourishing on the horizon.

The subject of this thesis is ethical aspects of risk management. It is argued that a model for risk management needs to be developed that acknowledges several ethical aspects and most crucial among these, the individual’s right not to be unfairly exposed to risks. Article I takes as its starting point the demand frequently expressed in the risk literature for a consistent risk management. Such consistency is often assumed to be in accordance with some kind of cost-benefit analysis. It is maintained that such a model, here called the Standard Model, does not respect the rights of the individual. Two alternative models are outlined in order to better deal with this ethical weakness, the Model of Inviolable Rights and the Model of Procedural Justice. The arguments in the alternative models evolve around the separateness of individuals, rights and fair risk taking. It is claimed that the latter model, which focuses on a fair procedure, seems most fruitful to develop. Article II is a discussion of the NIMBY (Not In My Backyard) conflict, which is well known from situations of siting potentially risky facilities. Of special concern is to investigate what the ethical premises are behind the negative characterization of the NIMBY concept. It is argued that, contrary to the assumption that the total benefit should outweigh the individual’s cost, individuals in siting scenarios have rights not to be unfairly exposed to risks. Article III, which is co-authored with Professor Sven Ove Hansson, presents a three party model as a tool for ethical risk analysis. It is argued that ethical dimensions need to be acknowledged in the analysis of risks and that this is best done through a discussion of three parties that are involved in risk decisions – the risk-exposed, the beneficiary, and the decisionmaker. Seven crucial ethical questions are recognized and discussed regarding the relation between these parties. By using examples from the railway sector it is shown how the questions can be used to identify salient ethical features of risk management problems. / QC 20101116

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This study examines the decision-making processes of residents in Turkey’s urban regeneration projects employing a single case study, namely, Çorum’s Kale neighbourhood. Çorum is a city with 250,000 inhabitants located in Black Sea Region. The aim is to uncover the factors influencing residents’ acceptance or rejection of urban regeneration and the role of the Turkish government in shaping their decisions. The thesis utilizes a Gramscian theoretical framework and mainly focuses on the fluid relationship between consent and coercion (Fusaro et al., 2017). Methods used in this research include reviewing relevant project documents and newspapers, various types of interviews including semi-structured, go-along and expert interviews, field observations, and photographic documentation of the neighbourhood, along with Tillmann-Healy’s (2003) “Friendship as method” approach capitalizing on the trust between neighbours and the researcher’s grandmother who resides in the investigated urban regeneration site. The literature reveals that the main factors shaping residents’ decisions both globally and in Turkey are the extent of resident participation in these initiatives, the presence of neoliberal authoritarian governance, residents’ socioeconomic positioning, cultural identity, tenure status, informal land ownership and perception of benefits like expanded infrastructure along with enhanced living standards, as well as their fears of forced eviction and displacement. On top of these factors, in Turkey, residents’ decisions are also shaped by fear of expropriation, religious and ethnic disparities, varying laws with different powers and the combination of neoliberal authoritarian governance with Islam. The empirical findings of this thesis suggest that the central issues causing Kale neighbourhood’s residents to reject urban regeneration are the absence of economic advantages provided by the government, which involves undervaluing their existing properties, reselling newly constructed relatively smaller units with higher prices and indebting them with substantial mortgages for extended periods. All in all, this thesis finds that residents’ decision-making process is multifaceted, involving a complex interplay of diverse factors that often affect them concurrently, underscoring the necessity for a holistic examination of their motivations. The thesis contributes to the existing literature by presenting a nuanced analysis of decision-making regarding urban regeneration in a highly polarized and contentious context. Furthermore, it adds to existing studies by presenting research on understudied, peripheral geography in Turkey, offering valuable insights into urban regeneration processes outside of the urban centers.

Longitudinal personalized electronic health record (LPHR) provides a holistic view of health records for individuals and offers a consistent patient-controlled information system for managing the health care of patients. Except for the patients in Veterans Affairs health care service, however, no LPHR is available for the general population in the U.S. that can integrate the existing patients' electronic health records throughout life of care. Such a gap may be contributed mainly by the fact that existing patients' electronic health records are scattered across multiple health care facilities and often not shared due to privacy and security concerns from both patients and health care organizations. The main objective of this dissertation is to address these roadblocks by designing a scalable and interoperable LPHR with patient-controlled and mutually-trusted security and privacy. Privacy and security are complex problems. Specifically, without a set of access control policies, encryption alone cannot secure patient data due to insider threat. Moreover, in a distributed system like LPHR, so-called race condition occurs when access control policies are centralized while decisions making processes are localized. We propose a formal definition of secure LPHR and develop a blockchain-enabled next generation access control (BeNGAC) model. The BeNGAC solution focuses on patient-managed secure authorization for access, and NGAC operates in open access surroundings where users can be centrally known or unknown. We also propose permissioned blockchain technology - Hyperledger Fabric (HF) - to ease the shortcoming of race condition in NGAC that in return enhances the weak confidentiality protection in HF. Built upon BeNGAC, we further design a blockchain-enabled secure and trusted (BEST) LPHR prototype in which data are stored in a distributed yet decentralized database. The unique feature of the proposed BEST-LPHR is the use of blockchain smart contracts allowing BeNGAC policies to govern the security, privacy, confidentiality, data integrity, scalability, sharing, and auditability. The interoperability is achieved by using a health care data exchange standard called Fast Health Care Interoperability Resources. We demonstrated the feasibility of the BEST-LPHR design by the use case studies. Specifically, a small-scale BEST-LPHR is built for sharing platform among a patient and health care organizations. In the study setting, patients have been raising additional ethical concerns related to consent and granular control of LPHR. We engineered a Web-delivered BEST-LPHR sharing platform with patient-controlled consent granularity, security, and privacy realized by BeNGAC. Health organizations that holding the patient's electronic health record (EHR) can join the platform with trust based on the validation from the patient. The mutual trust is established through a rigorous validation process by both the patient and built-in HF consensus mechanism. We measured system scalability and showed millisecond-range performance of LPHR permission changes. In this dissertation, we report the BEST-LPHR solution to electronically sharing and managing patients' electronic health records from multiple organizations, focusing on privacy and security concerns. While the proposed BEST-LPHR solution cannot, expectedly, address all problems in LPHR, this prototype aims to increase EHR adoption rate and reduce LPHR implementation roadblocks. In a long run, the BEST-LPHR will contribute to improving health care efficiency and the quality of life for many patients. / Doctor of Philosophy / Longitudinal personalized electronic health record (LPHR) provides a holistic view of health records for individuals and offers a consistent patient-controlled information system for managing the health care of patients. Except for the patients in Veterans Affairs health care service, however, no LPHR is available for the general population in the U.S. that can integrate the existing patients' electronic health records throughout life of care. Such a gap may be contributed mainly by the fact that existing patients' electronic health records are scattered across multiple health care facilities and often not shared due to privacy and security concerns from both patients and health care organizations. The main objective of this dissertation is to address these roadblocks by designing a scalable and interoperable LPHR with patient-controlled and mutually-trusted security and privacy. We propose a formal definition of secure LPHR and develop a novel blockchain-enabled next generation access control (BeNGAC) model, that can protect security and privacy of LPHR. Built upon BeNGAC, we further design a blockchain-enabled secure and trusted (BEST) LPHR prototype in which data are stored in a distributed yet decentralized database. The health records on BEST-LPHR are personalized to the patients with patient-controlled security, privacy, and granular consent. The unique feature of the proposed BEST-LPHR is the use of blockchain technology allowing BeNGAC policies to govern the security, privacy, confidentiality, data integrity, scalability, sharing, and auditability. The interoperability is achieved by using a health care data exchange standard. We demonstrated the feasibility of the BEST-LPHR design by the use case studies. Specifically, a small-scale BEST-LPHR is built for sharing platform among a patient and health care organizations. We engineered a Web-delivered BEST-LPHR sharing platform with patient-controlled consent granularity, security, and privacy realized by BeNGAC. Health organizations that holding the patient's electronic health record (EHR) can join the platform with trust based on the validation from the patient. The mutual trust is established through a rigorous validation process by both the patient and built-in blockchain consensus mechanism. We measured system scalability and showed millisecond-range performance of LPHR permission changes. In this dissertation, we report the BEST-LPHR solution to electronically sharing and managing patients' electronic health records from multiple organizations, focusing on privacy and security concerns. While the proposed BEST-LPHR solution cannot, expectedly, address all problems in LPHR, this prototype aims to increase EHR adoption rate and reduce LPHR implementation roadblocks. In a long run, the BEST-LPHR will contribute to improving health care efficiency and the quality of life for many patients.

Syftet med uppsatsen var att undersöka hur prostitution, sexköpare och sexsäljare, framställs i tryckt media. I detta fall, i åtta nyhetsartiklar från Aftonbladet. Detta för att sedan kunna se hur eller om diskursen förändrats, före och efter #Metoo. Metoden som användes var en kvalitativ, kritisk diskursanalys, med grund i representationsteori och genusvetenskap. Med dessa teorier som utgångspunkt har flera skillnader kunnat visas, medan andra detaljer fortsatte att existera. Resultatet säger att prostituerade kvinnors historier sällan var beskrivna i artiklar innan #Metoo, vilket det i högre utsträckning var efter #Metoo. Sexköparnas historier däremot framkommer ofta innan, och allt mindre efter. Dessa beskrivs även som närhetssökande, ensamma män, medan de efter #Metoo alltmer framställs som förövare och torskar på gruppnivå. Aftonbladets problemformulering tycks också ha ändrats. Slutsatsen var att texterna innan uppropen fokuserade på männen, hur de gått tillväga och varför de köper sex. Efteråt beskrivs ett systematiskt samhällsproblem, som heter människohandel och prostitution. / The purpose of this thesis was to examine how prostitution, sex buyers, and sex sellers are portrayed in print media. In this case, eight news articles from Aftonbladet were analyzed. This was done to see how or if the discourse has changed before and after #Metoo. The method used was a qualitative, critical discourse analysis, based on representation theory and gender studies. With these theories as a foundation, several differences have been identified, while other details continued to persist. The results indicate that the stories of prostituted women were rarely described in articles before #Metoo, but were more frequently covered after #Metoo. Conversely, the stories of sex buyers often appeared before and became less common afterward. Before #Metoo, sex buyers were depicted as men seeking closeness and being lonely, whereas after #Metoo they were increasingly portrayed as perpetrators and johns at a group level. Aftonbladet's problem formulation also seems to have changed. The conclusion was that the texts before the movement focused on the men, how they acted, and why they bought sex. Afterwards, a systematic social problem called human trafficking and prostitution is described.