the Kantian maxim, as mentioned above. What is missing from the discussion at large, in my opinion, is an in-depth analysis of the situation of savior siblings’ childhood, and of how being born with the expectation to save another person’s life as well as undergoing regular medical interventions to do so impacts their identity and the identity of their sibling(s). Parents who plan a savior sibling’s birth are also the legal guardians who make medical decisions for this child. If the child’s birth was planned to save a sibling’s life, if that’s the trajectory, how could there be the space for parents to acknowledge that medical interventions that the savior sibling undergoes to help its sibling might be too difficult for them? Dr. Simon Fischel, a UK based fertility specialist who has treated couples to conceive a savior sibling “believes that concerns about the long- term implications for the donor child should not stop the conception of a savior sibling. ‘There is no evidence that when an aura of goodwill and good health exists for that child, that it would be psychologically damaged even if the treatment doesn't work,’ says Fischel” (Wheelwright 2004: online source). Conversely there is no proof that there wouldn’t be long-term psychological effects either.
As the example above illustrates, RGTs and biomedical research raise very complex questions. Both RGTs and biomedical research act on the level of embodiment and on the level of identity. They also change ideas of who we are to each other through the very practice of how bodily substances travel between bodies. This study looks at some of the complexities involved in RGTs and biomedicine, acknowledging that in order to make a contribution to a vocabulary that would allow for experts from various disciplinary backgrounds to discuss issues, this study has to be inclusive of discourses, voices, and concerns as they stem from various disciplines. Having acted as a bioethics expert in European Commission meetings in the past, and having listened to discussions involving experts from different disciplinary backgrounds, the need to be able to speak to each other became utterly clear to me. Again, this also brings back the question of how we are Mitmensch to each other. Are we speaking to each other or are we trying to convince each other? To exemplify, the “Translational Medicine and Public Health Policy: Lessons from Biobanks Ethical, Legal, Social Issues” workshop hosted by the Brocher Foundation in Geneva in Switzerland in December 2007 brought together humanities and life sciences researchers alike, some of whom directly engaged in policy making regulating the life sciences in Europe at the time. I believe that all of us who [26] had the honor to have been invited to present knew what we wished to discuss. However, I am certain that most of us failed to talk about it in ways that would have been understood by the majority of listeners and thus fostered a joint discussion. Most of the Q&A’s that followed presentations focused on clarifying medical procedures or terms used. My presentation at the Brocher Foundation focused on human vulnerability as a core condition to how we relate to each other and to medical research and practice. The paper also laid out the pedagogical responsibility when discussing medical consent forms with various (vulnerable) populations. At the time of this research, consent forms were oftentimes discussed with potential participants by social workers, thus framing the conversation to be pedagogical rather than medical. I remember feeling very humbled to be presenting at the prestigious foundation. And then, something very strange happened. Jan Helge Solbakk, who at the time held the position of Chief of Bioethics for the UNESCO in Paris, presented shortly after I spoke. His presentation focused on the failures of Informed Consent as a tool in biobanking. He then continued with reference to my presentation and stated: “Maybe vulnerability will be more important than Informed Consent?” (Solbakk 2007: presentation). For me, the concept of vulnerability when applied to Informed Consent procedures in biobanking again refers back to Korczak’s term “future people,” in so far as participants in biobanking projects are not a means to an end, here the end being the future success of research conducted using bodily substances they (the participants) provide. Solbakk’s acknowledgement marks the moment when I understood that my work on embodiment, Leib, and the human condition to be vulnerable, had the potential to make a valuable pedagogical contribution to the ethical, social, and political discussion of biomedical practice. There is no area of pedagogical practice where human vulnerability does not matter. Solbakk finished his presentation on Informed Consent acknowledging that biomedical research, including RGTs, is complicated by asking: “Is human kind not worth these complications?” (ibid).
In this sense, let’s get complicated – because we are worth it. Besides, because I am certain that the complex issues discussed in this study, and the vocabulary used, lend themselves to and are open to contributing themselves to the discussion of crucial contemporary pedagogical questions and concepts, such as, for example, arising in the field of subaltern pedagogy, as developed by School of Teacher Education & Leadership Assistant Professor Shireen Keyl at Utah State University in her article, “Subaltern Pedagogy, A Critical Theorizing of Pedagogical Practices for Marginalized Border-Crossers” (Keyl 2017). Her article underlines that vulnerabilities are established intersectionally, and that marginalizations, experienced by certain populations, communities, and individuals, cannot speak for marginalizations experienced by other populations, communities, or individuals. Yet, the analysis of such marginalizations can inform pedagogical discussions looking at the intersectionality of [27] marginalizations, as these materialize at borders, in medical laboratories and biomedical practices, in legal discussions, and so on.
1.1.3 Content of Chapters
Each of the chapters of this book lays out the content and order of issues discussed and analyzed at the beginning of the chapter. Additionally, and upon request by the group of colleagues who provided feedback for the original study, I also provide an overview as part of this introduction. In following my colleagues’ advice, I am acknowledging readers’ needs and the understanding that the reason for any author to write is for an audience to read. Having asked why I should provide information about the content of chapters twice, all readers so far stated, that they wanted a place to “go back to” to read about the content of each chapter as part of the whole story, but also a place to quickly return to at the beginning of each chapter providing information about the chapter’s content only.
Following this introduction, chapter two, titled “On the Matrix of this Study OR How to Soar,” creates connections to work conducted and theories developed in various disciplines related to this research at the time during the original data collection for this study. It furthermore introduces embodied ways of engaging with a field in which developments change at very a fast pace. In the second chapter, I additionally outline the overall conceptual approach and interdisciplinary nature of the study.
In chapter three, titled “The Methodological Conceptualization of the Project,” I lay out the methodological approach employed in the study according to the conceptualization of this research, including the bilingual fieldwork conducted, and the analysis and writing-up of the data. I continue the chapter, emphasizing how these categories of research practice are not temporally, nor spatially distinct, but rather have overlapped in various ways consistently throughout the study. The chapter provides insight into factors that influenced the choice of the research area as well as the thematic topic. This section also provides information about the pre-study conducted in relation to the PhD that this book is based on, and its impact on the research design of this study. Following this section, I provide a summary of the multi-sided approach to qualitative research employed in this study, and the various sites, which characterized the “location” of my research. I outline how I made the decision to conduct research and collect data in the UK and Germany. In addition, I explain how the approach taken in this study relates to a wider group of comparative research conducted at the interface of life and social sciences. This third chapter also speaks to how technologies addressed in this study were chosen and how they can be “clustered.” Next, I explain how I conducted the fieldwork for this project and specify information about the visual and conversational data collected, [28] the definition of experts and expertise used within this study, the means of choosing and contacting conversation partners and the composition of the conversation guidelines. Lastly, I focus on the methodological processes that informed the analysis and writing of the dissertation foundational to this book, as well as the inclusion of art production as a process-related analytical tool. I additionally articulate the means by which the conversations were transcribed and authorized. Within the same subsection, I furthermore address choices made with respect to