notions developed by Henry Giroux, one of the founding theorist of critical pedagogy in the United States, best known for his groundbreaking work in public pedagogy. In his book, Trans(per)forming African American History and Identity, Maurice Stevens uses Giroux’s words and partly his own words to underline that we need to be [24] “advancing a pedagogical practice capable of ‘questioning the very conditions under which knowledge and identities are produced.’ […] Giroux posits that postdisciplinary pedagogy responds to the problem of ‘the relationship between knowledge and power, language and experience, ethics and authority […].’ Giroux’s postdisciplinary pedagogy, ‘examines the intersection between culture and power’” (Stevens 2003: 173 and Giroux cited in Stevens 2003: 173). When listening to lectures, such as the one referred to above by Zoloth, Foucault’s awareness of the situatedness of any research and any researcher and Giroux’s future leading work addressing necessary challenges to take on in postdiciplinary pedagogical research and practice, helped me to acknowledge that a researcher, such as Zoloth, found it important to provide the mix of information she provided. Yet, it is just as crucial for me as a pedagogy scholar to understand both the knowledge provided and ways in which I hear and think about it as situated within a net of culture and power.
One of the first pedagogues I ever learned about was Janusz Korczak.11 I believe that I did not first hear about him in an educational environment, but at home in the private sphere. Korczak is believed to have said, “children are not future people” (Korczak 1994: 4). Throughout this study it has been my training and my practice in pedagogy, but also the acquaintance of long-term “companions” such as Korczak, that continually reminded me to pay attention to what it is that diverse people experience now, instead of focusing on future promises or lives. In my pedagogical practice paying attention to what people experience now, and indeed using experiences in the here and now is a resource. For example, in the field of aesthetic education, attuning to the here and now has been a crucial tool to a pedagogy that is based on relational respect.
While Korczak’s statement is commonly read as an argument to respect children fully as persons, for me, his open and clear declaration had the capacity to remind me that first of all it is our responsibility as pedagogues to engage in the making of environments that foster societies to further human kind in performing being Mitmensch to each other and not being “more” Mitmensch to some than to others. I came across Korczak’s words again, shortly after rereading opinions on Adam Nash’s birth. Next, I came across a statement by Adam’s father who recently stated, “I think that what was the controversy, is, ‘What have we created?’” (Nash, Lisa. Quoted in Hendrickson, Molly, 2017: online source).
I suggest that in relation to Adam’s story, Korczak’s term “future people” can be read as a reminder of the peopled space of the here and now in which pedagogy acts. Every child, every person, has the right to first of all be a person in the here and now. Adam however, per my extended reading of Korczak’s concept, was a future person. He was a future person first; he was the one to [25] come into the future of his family, as discussed and planned on their family table, to save his sister’s future life. There is something unsettling about the idea of future people. And that something also has to do with the fact that there isn’t just one Adam being born after a discussion on one family table. Adam’s birth eased the path for legal frameworks outlining savior siblings to be discussed in various parliaments. Mostly, these discussions focus on PID as a selective medical practice and in some countries include the discussion of 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
