Introduction: Ironists, reformers, or rebels?

Public engagement has become increasingly important within the sphere of science policy making. A broad range of discursive experiments and participatory methods involving citizens, consumers, and other key stakeholders are frequently used to consult the public about their opinion of new developments in science and technology. This special issue of STI-Studies aims at addressing the role(s) of scholars in this important field. Having personally participated in a variety of public engagement exercises and public discourse experiments, and having carefully considered how we (as social scientists) fit within these exercises, we have come to realise that our roles are heterogeneous, complex and ambiguous. Social scientists complete a number of tasks in participatory science policy making: For example, they initiate public and/or stake holder discourses by adopting or even developing participatory and discursive methods. They organise and moderate various dialogues (for the case of Germany see e.g. Renn 1999). They oversee various public discourse events and evaluate the process (for the case of Switzerland see e.g. Gisler 2000-2003). They analyse and comment on the impact of participatory methods, drawing on sociological and political theories (e.g. Maasen/Merz, 2006). In brief, social scientists play a variety of formal roles, serving as organisers, moderators, evaluators, commentators and others. However, these formal descriptions are rigid and do not fully convey the underlying social, moral and political dimensions of these roles. Furthermore, there is some ambivalence between the formal functions and the socio-moral-political roles taken on by social scientists. This ambivalence arises due to a conflict between the form and content of these roles as well as the fact that multiple roles may coincide with each other. For a better understanding of the ongoing debate on participatory science policy making, it is necessary to reflect upon this ambivalence because it affects social scientists accomplishments in this important field. Our contribution to the recent debate is a kind of self-reflexive turn: We would like to carefully consider the role of the social sciences and the role(s) social scientists expect and are expected to play in the field of participatory science policy making. Therefore, in this introduction, we raise the following questions from a theoretical point of view: How do the social sciences influence participatory policy procedures? What kind of explicit and/or implicit role(s) do social scientists play in the construction of political procedures and public debates? In an effort to address these questions, we will, first, argue how participatory policy making is linked to the social sciences and its methodologies (chapter 1). Second, we will contextualize the development of participatory policy making within the methodological framework of the social sciences and the broader historical shift towards the democratization of society (chapter 2). Third, we will assess some of the roles social scientists have come to play in participatory policy making. We suggest a way of rethinking such roles by unmasking their often rather implicit social, political and moral premises and by critically reflecting on the idea that there is only a formal role played by the social sciences. This way Canadian philosopher Ian Hacking (1999). We will highlight some of the complexities and moralities linked to the concrete roles the social sciences play, especially in the sphere of science and politics. This will be discussed in more detail in the case studies and articles assembled in this issue (chapter 3). Fourth, and finally, we would like to consider some looping effects that the deconstruction of social scientific roles may have on participatory policy making on a more general level (chapter 4). The social sciences, as a collection of disciplines, could eventually contribute more to participatory policy making by reflecting on its current role(s) and by revising the methods that are applied to specific scientific fields. In doing so, the social sciences may gain considerable insight into how they function as a thought collective

Failed surrogate conceptions: social and ethical aspects of preconception disruptions during commercial surrogacy in India

BACKGROUND: During a commercial surrogacy arrangement, the event of embryo transfer can be seen as the formal starting point of the arrangement. However, it is common for surrogates to undergo a failed attempt at pregnancy conception or missed conception after an embryo transfer. This paper attempts to argue that such failed attempts can be understood as a loss. It aims to reconstruct the experiences of loss and grief of the surrogates and the intended parents as a consequence of their collective failure to conceive a surrogate pregnancy. METHODS: Drawing on a qualitative study conducted over a period of eight months between 2014 and 2015 at two fertility clinics in Delhi and two in Kolkata, India, this paper examines the experiences of the surrogates and the intended parents when faced with missed conceptions or failed conceptions during a surrogacy arrangement. RESULTS: We argue that while the surrogate grieves the non-arrival of a ‘good news’ as an uncertain loss, the intended parents experience yet another, failure in addition to the losses they might have incurred during their previous fertility treatments. The body of the surrogate becomes a site of ‘a lost opportunity’. The surrogate embodies a loss in her quest to achieve social mobility and the intended parents experience a disembodied pregnancy loss. This very emotional experience stands in stark contrast to the conceptualisation of such failed attempts as non-events within the discourse of the surrogacy industry. The experience of loss of the intended parents is recognised but their grief is given no space. We argue that such ambiguity around the nature of losses resulting out of a missed or failed conception during surrogacy is an outcome of lack of interpersonal relationship between the surrogate and the intended parents. CONCLUSIONS: Since commercial surrogacy is a relational process, the only way in which the experiences of losses and failures of the actors at the preconception stage can be better addressed is through developing close sharing and understanding between each other through an ethics of care. Therefore, to nurture caring relationships, surrogacy needs to be understood as a moral commitment by –the surrogates and intended parents. To enable such a commitment, there is a need to reconsider the pre-defined and legally regulated professional duty of the doctors, agents and agencies. It cannot be a one-sided commitment, but has to have elements of mutuality

Why the way we consider the body matters – Reflections on four bioethical perspectives on the human body

Abstract Background Within the context of applied bioethical reasoning, various conceptions of the human body are focused upon by the author in relation to normative notions of autonomy. Results The author begins by descriptively exploring some main positions in bioethics from which the "body" is conceptualized. Such positions conflict: the body is that which is constitutive of the individual's experience and perception, or it is conceived of materially or mechanistically; or as a constructed locus, always historically and culturally transformed. The author goes on to suggest a methodological approach that dialectically considers embodiment from four different perspectives: as bodily self-determination, as respect for the bodily unavailability of the other, as care for bodily individuality; and lastly, as acknowledgement of bodily-constituted communities. These four perspectives encompass autonomy in two of its main interpretations: as the capability of a person to act independent of external forces, and as the moral ideal of pursuing individual wishes by means of role distance, self-limitation and universalization. Various bioethical cases are utilized to show how the four perspectives on the body can complement one another. Conclusion The way we consider the body matters. The author's dialectical method allows a premise-critical identification and exploration of bioethical problems concerning the body. The method is potentially applicable to other bioethical problems.</p

The "spare parts person"? Conceptions of the human body and their implications for public attitudes towards organ donation and organ sale

<p>Abstract</p> <p>Background</p> <p>The increasing debate on financial incentives for organ donation raises concerns about a "commodification of the human body". Philosophical-ethical stances on this development depend on assumptions concerning the body and how people think about it. In our qualitative empirical study we analyze public attitudes towards organ donation in their specific relation to conceptions of the human body in four European countries (Cyprus, Germany, the Netherlands and Sweden). This approach aims at a more context-sensitive picture of what "commodification of the body" can mean in concrete clinical decisions concerning organ donation.</p> <p>Results</p> <p>We find that moral intuitions concerning organ donation are rooted in various conceptions of the human body and its relation to the self: a) the body as a mechanical object owned by the self, b) the body as a part of a higher order embodying the self, and c) the body as a hierarchy of organs constitutive of the self.</p> <p>Conclusion</p> <p>The language of commodification is much too simple to capture what is at stake in everyday life intuitions about organ donation and organ sale. We discuss how the plurality of underlying body-self conceptions can be taken into account in the ethical debate, pointing out consequences for an anthropologically informed approach and for a liberal perspective.</p

The ethics of ‘public understanding of ethics’—why and how bioethics expertise should include public and patients’ voices

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding of ethics,” addressing three different issues: (a) the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, (b) the normative relevance of such lay moralities for the justification of ethical decisions, and (c) the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ

The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature

The acquisition of genetic information (GI) confronts both the affected individuals and healthcare providers with difficult, ambivalent decisions. Genetic responsibility (GR) has become a key concept in both ethical and socioempirical literature addressing how and by whom decision-making with respect to the morality of GI is approached. However, despite its prominence, the precise meaning of the concept of GR remains vague. Therefore, we conducted a systematic literature review on the usage of the concept of GR in qualitative, socioempirical studies, to identify the main interpretations and to provide conceptual clarification. The review identified 75 studies with primarily an Anglo-American setting. The studies focused on several agents: the individual, the family, the parent, the healthcare professional, and the institution and refer to the concept of GR on the basis of either a rational/principle-oriented approach or an affective/relational approach. A subtype of the rational/principle-oriented approach is the reactive approach. The review shows how the concept of GR is useful for analyzing and theorizing about socioempirical findings within qualitative socioempirical studies and also reveals conceptual deficits in terms of insufficient theoretical accuracy and heterogeneity, and in the rarity of reflection on cultural variance. The vagueness and multiplicity of meanings for GR in socioempirical studies can be avoided by more normative-theoretical explication of the underlying premises. This would provide a higher degree of differentiation of empirical findings. Thereby, the complex findings associated with the individual and social implications of genetic testing in empirical studies can be better addressed from a theoretical point of view and can subsequently have a stronger impact on normative and policy debates

AI-assisted ethics? considerations of AI simulation for the ethical assessment and design of assistive technologies

Current ethical debates on the use of artificial intelligence (AI) in healthcare treat AI as a product of technology in three ways. First, by assessing risks and potential benefits of currently developed AI-enabled products with ethical checklists; second, by proposing ex ante lists of ethical values seen as relevant for the design and development of assistive technology, and third, by promoting AI technology to use moral reasoning as part of the automation process. The dominance of these three perspectives in the discourse is demonstrated by a brief summary of the literature. Subsequently, we propose a fourth approach to AI, namely, as a methodological tool to assist ethical reflection. We provide a concept of an AI-simulation informed by three separate elements: 1) stochastic human behavior models based on behavioral data for simulating realistic settings, 2) qualitative empirical data on value statements regarding internal policy, and 3) visualization components that aid in understanding the impact of changes in these variables. The potential of this approach is to inform an interdisciplinary field about anticipated ethical challenges or ethical trade-offs in concrete settings and, hence, to spark a re-evaluation of design and implementation plans. This may be particularly useful for applications that deal with extremely complex values and behavior or with limitations on the communication resources of affected persons (e.g., persons with dementia care or for care of persons with cognitive impairment). Simulation does not replace ethical reflection but does allow for detailed, context-sensitive analysis during the design process and prior to implementation. Finally, we discuss the inherently quantitative methods of analysis afforded by stochastic simulations as well as the potential for ethical discussions and how simulations with AI can improve traditional forms of thought experiments and future-oriented technology assessment