an entry point to studying Leiblichkeit and contemporary challenges to how we are Mitmenschen to each other is fundamentally pedagogical. It provides a terminology with which to discuss how biomedical developments enter the private space of the family. An example is savior siblings, genetically “designed” to save a sibling’s life, raising deeply pedagogical questions such as: Is having a savior sibling using the child exclusively as a means to an end? How do such novel social and hierarchical family structures impact the development of both children, their identity and relationship with each other? And finally, is there no longer a family table? To phrase the last question differently: are decisions about having or not having children (and the why behind those decisions) no (longer) intimate and ultimately private for families to make at their families’ tables?
The second opening quotation to this section is from Lisa Nash, the mother of Adam Nash, who in 2001 was born in the US as the first known savior child to benefit his sister Molly. When I read the interview with Adam Nash’s parents, I was struck by Lisa Nash’s idea that discussing planning to have a savior sibling child could possibly be a discussion she and her husband could own in so far as that it only would regard their private sphere, in the sense of not leaving the family’s table. While not dealing with savior siblings in this study, in analyzing RGTs and biomedical developments, as well as new injustices and the global nature of biomedical practices, this study provides a vocabulary and background knowledge to discuss questions arising from, as Maura Dickey puts it, “having a child for their spare parts.” (Dickey 2015: online source) It furthermore points to the fact that even if Pre-Implantation Diagnostic (in the literature referred to PGD or PID or PIGD)10 and related medical procedures involved in the “creation” of a savior sibling to be born are currently not legal in three European countries, including Germany, this could result in a couple traveling to another country to undergo procedure, as done by the English couple Katie and Andy Matthews, who went to the US to undergo PID procedures resulting in the birth of their son Max in 2003, who acted as a savior sibling for his sister Megan (Walsh 2010: online source).
If we are going to treat children as if they are merely made of harvestable parts, then we should also establish legal standards that provide an independent advocate for the savior sibling. It is uncommon for such a polarizing practice to be left unaddressed, particularly in the realm of protecting or exploiting human dignity. The rapidly evolving arena of bioethics is a force to be reckoned with, threatening to dismantle the traditional view that the parent knows best. But to frame the conditions for such an ethically questionable practice is far better than simply continuing to stand by and do nothing. (Dickey 2015: online source)
[22] To address pedagogical questions that arise from developments in RGTs and biomedicine and are related to identity, family dynamics, parenthood and so on, I did find it crucial to investigate the “space between” disciplinary voices, vocabularies, and research among the following disciplines. The following list emphasizes pedagogy, as my disciplinary “home” at the top of the list. Below pedagogy, in alphabetical order, are the disciplines with which this study builds conversational structures. While I can’t display a dynamic and interactive figure in this print, I request that you imagine the various disciplines and schools of thoughts listed to be in a lively conversation, with various voices joining in at different times.
Pedagogy
• Anthropology
• Architecture and Urban Studies
• Art History and Studio Art
• Biology
• Disability Studies
• Economics
• Ethics and Religious Studies
• Global Studies and International Relations
• Jewish Studies
• Legal Studies
• Medicine and Life Sciences
• Philosophy
• Postcolonial Studies
• Science Studies
• Translation Studies
• Women's Gender and Feminist Studies
Chapter seven which looks at art as a tool to engage with developments in RGTs and biomedicine activates the idea of an interdisciplinary conversation in a different manner. There I invite a group of people to a dinner table to have a conversation.
In 2005, I presented a paper at the European Science Foundation Conference. The conference was called “Biomedicine within the limits of Human Existence and took place in Doorn in the Netherlands.” One of the other presenters was Laurie Zoloth, who currently is the Margaret E. Burton Professor of Religion and Ethics in the Divinity School and the Senior Advisor to the Provost for Programs on Social Ethics at the University of Chicago. In the past, she acted as president of the American Society for Bioethics and Humanities. Like so many presentations that I listened to at the time, her presentation titled “Living Under the Fallen Sky” first approaches ethical questions of what she calls “basic biomedical research” from various disciplinary directions before inserting private information, such as the memory of driving her children back from school, the color of her daughter’s hairclip, and finally the story of her family’s [23] visit to a water park. Still very insufficient as a listener to English presentations in the complex field of biomedicine, I struggled to follow her argument. In front of my inner eye were images of the snow falling in front of Zoloth’s window in Chicago, petri dishes, the color of one of Zoloth’s daughter’s hair clip forgotten in the garden, stem cells, Zoloth’s son in the back of her car when driving back from a school retreat demanding to go to a water park, and a 27- week-old baby struggling to breathe born to a devoted Hindu couple in the US, his mother wearing a yellow sari and both parents being good cooks. As I listen, my brain struggles to handle what feels like an overload of detailed information that seem unrelated to the topic addressed. In this dense mix of information and stories, I reach first a state of exhaustion and then gratefulness when towards the end of her presentation Zoloth’s mandate appears simple and manageable. She states: “We ought to remember that our neighbor, the scientist, is largely driven by the same sort of duties that any scholar learns to love – to speak the truth, and to show a new path across interesting terrain. Further, we need to work patiently to remind others that it is not rights but duties that make us human, and that the duty to heal is even prior to freedom” (Zoloth 2008: 309). Yes, it is true that my neighbor, in the sense of the person sitting next to me during ethical discussions regarding biomedical research that I attended (for example at the European Commission), would very likely have been a scientist and I agree, it did not appear that evil (a word Zoloth uses throughout her work) would have been on their mind when talking about the motivation for research conducted. Money and being at the “forefront” of research was though. My brain fails to filter information received by Zoloth. Instead, I take her story-soaked presentation as impulse to understand that biomedical research is about everything, even the color of one’s daughter’s hair clip. It is about memories and hopes for certain futures to materialize. However, if it is about everything, it is precisely also about biomedical research repeating, re-establishing and re-enforcing intersectional injustices, such as between citizens of Eastern European and Western European countries, when it comes to either be recipient of a novel treatment developed or provider of bodily substances used in research.
As a means to echo and “swing with” the notion that so much about how RGTs and biomedical practices are framed and discussed in various public spheres is about memories and hopes, I will conclude this section by having Foucault entertain the thoughts of a postdiciplinary pedagogue. Finally, I will end this section with a pedagogical voice from the past and thus with
