Conference Agenda

Ground-breaking innovation in cardiac surgery is by default surrounded by ethical dilemma’s, including amongst others questions on life and death, quality of life, impact on the next of kin, dilemma’s regarding testing and outcomes for first patients, societal impact of innovations, and many more. The consideration of these ethical issues is – if at all - often compartmentalized: researchers focus on their own piece of the innovation and the issues surrounding their efforts, but are not stimulated to look at the holistic impact of their innovation, due to a lack of resources, lack of experienced urgency, or other priorities. In this paper, we show how it can be done differently and more integrated.

In the Dutch project (X), researchers from 6 universities and universities of applied sciences are working on the development of a soft biocompatible artificial heart. The project stretches from material development, to soft robotics, systems engineering, health technology assessment, and aims to end with a prototype that can function in a test animal for several weeks. It was recognized that ethical considerations need to play a major role in this project. Therefore, an ethical parallel track (EPT) (Dorrestijn & Eggink, 2021) was designed, aimed at interdisciplinary collaboration to identify, discuss, and incorporate ethical considerations in all phases of the project. The EPT involves all researchers and partners in the project.

In this paper, we show how this ethical parallel track works in practice, with focus on 2 activities. Firstly, we show how peer to peer sessions with daily researchers enable researcher reflexivity. In these recurring sessions, decisions in the day-to-day work of the researchers are discussed in small interdisciplinary and interinstitutional groups, in order to align the empirical and ethical implications and point out their trade-offs. This enables the project management incorporate ethical considerations in choices regarding prototypes to continue during the project. Secondly, we show how insights on ethical implications are collected and used to develop and adjust the approaches for user research and co-design sessions. This for instance enables the partners to develop an ethics-inclusive patient journey.

Outcomes on individual and group reflection, impact on the project deliverables, and work on the incremental changes to the EPT are expected in the next 4-5 years, as the project runs from 2023 to 2030. First results from the mentioned activities show that there is an enthusiastic response on the inclusion of ethics in the day-to-day research activities from all daily researchers. The need for a more ethics-inclusive approach is widely recognized, and the methods seem to be a good fit for the project. We therefore dare to dream: uncovering matters of this heart is a matter of time and teamwork.

The high level of abstraction connected to emerging technologies renders their governance and ethical analysis immensely difficult. This challenge is not only faced within the evaluation and management of early-stage technological development, but also during their actual hands-on construction and design. To deal with the inherent vagueness of these new, not yet consolidated technologies, designers and engineers explicitly and implicitly apply metaphors rendering abstract problems tangible. Metaphors aid the developers of technology by highlighting the essential aspects of given problems (Casakin 2007, p. 24), comparing future technologies to established ones (Boon and Moors 2008, p. 1916), clarifying ambiguous circumstances (Nugent and Montague 2021, p. 228), finding solutions in nature (Hey et al. 2008, p. 283), contextualising prospective developments (Boon and Moors 2008, p. 1925), or building foundations for communication and social bonds related to their design task (Nugent and Montague 2021, p. 228).

Metaphors are more than literary ornaments. They encompass the capability to bridge the abstract and the concrete. An aspect that George Lakoff and Mark Johnson highlight in their highly influential conceptual metaphor theory. According to Lakoff and Johnson, metaphors structure our experience of the world (Lakoff and Johnson 2011). This is achieved through a projection from concrete and embodied physical experience to non-physical concepts (Johnson 1987, p. 34), meaning that metaphors use patterns that we obtain through experience in the physical world, leading to a movement of understanding from the concrete to the abstract. It is this bridge from the concrete to the abstract that makes metaphors useful for engineering and design. The abstract, envisioned technology becomes tangible through metaphorical imagery; it gets pulled into the realm of physical experience before ever leaving the conceptual stage. And since design and engineering are themselves embodied processes, metaphors provide a missing link between lofty ideas and the concrete construction artefacts.

In our talk, we will present an approach that makes insights concerning the role of metaphors within technological development usable for integrated ethics. As part of our greater methodological framework called Ethical Vision Design, this metaphor approach aims to co-shape normative visions and align concepts and practices with these visions. Next to the theoretical background, our presentation will introduce our approach to working with metaphors, which will be illustrated through an example of its implementation within the on-going research project GlobalResist – an interdisciplinary, early-stage research and development project that aims to create a biomedical device for the more efficient testing of antibiotics. Our approach consists of two steps. First, a metaphor investigation is applied to analyse dominating metaphors in the relevant field and the individual development team. Second, we use a workshop format to check if metaphors align with the respective vision and investigate alternative metaphors if necessary.

Metaphors are thus conceptual vehicles, meaning that they can shape technology development in decisive ways. They allow us to pull the fuzzy conceptions of emerging technologies into the realm of lived experience. The presented metaphor approach offers one replicable way to harness this power of metaphors for technological development.

Literature

Boon, Wouter, and Ellen Moors. 2008. “Exploring Emerging Technologies Using Metaphors – A Study of Orphan Drugs and Pharmacogenomics.” Social Science & Medicine 66(9): 1915–27.

Casakin, Hernan Pablo. 2007. “Metaphors in Design Problem Solving: Implications for Creativity.” International Journal of Design 1(2): 23–35.

Hey, J, J Linsey, A M Agogino, and K L Wood. 2008. “Analogies and Metaphors in Creative Design.” International Journal of Engineering Education 24(2): 283–94.

Johnson, Mark. 1987. The Body in the Mind: The Bodily Basis of Meaning, Imagination and Reason. Chicago London: The University of Chicago press.

Lakoff, George, and Mark Johnson. 2011. Metaphors We Live By. 6. print. 6. print. Chicago, Ill.: Univ. of Chicago Press.

Nugent, Paul D., and Richard Montague. 2021. “The Use of Metaphor in Systems Engineering Practice: A Preliminary Sociological Study.” Issues In Information Systems 22(2): 223–30.

This paper presentation is a historical and philosophical work-in-progress that identifies absences and gaps in the historiography of medical technologies. Taking a unique type of amputation as a case study, I emphasize how technological knowledge and human agency shape development and understanding in three domains — surgical life, prosthetic development, and human/patient experience. Surgical procedure, prosthetic design, and human experience are deeply intertwined in ways not typically borne out of any body of literature. This presentation engages with postphenomenology, the concept of technological knowledge, and epistemic justice in narrating through histories we know and those we do not.

Rotationplasty is an impressive surgical procedure (and an alternative to above-knee amputation) used today primarily on patients with childhood bone cancers and particular congenital limb differences, though its history takes us back to 1927 Germany with a young boy whose leg was stunted in its growth by tuberculosis. The procedure was then made more popular in the 1950s in the Netherlands for patients with a congenital limb difference. The procedure finally began being used for osteosarcoma (its majority use today) in 1981 in Austria. Recently, the procedure has recently been reported as being performed in Syria (2021), and recommended as useful for patients of “low income status.”

Since the first publication of the rotationplasty in 1930, which features pictures of a young woman after her procedure in a prosthesis, the prosthestic design has remained largely the same with different materials. (The woman’s shoe, which is part of her prosthesis, has a higher heel than my rotationplasty prosthesis can even accommodate today.) There is something to be said about designs that endure, especially when so much discourse about prosthetic advancement characterizes them as ever-developing and improving.

Today, rotationplasty amputees are networked through social media and use each other’s knowledge to get better care and better fitting devices. Through this network, they help each other find appropriate surgeons and prosthetists and advocate for rotationplasty in wider use. Considered ugly by some surgeons, this is a procedure that was once more often to boys than girls, and offered only to children. Finding information about rotationplasty was once incredibly difficult, and patients are often advocates for themselves using what they have heard from others (and can now find more readily in community-driven materials). Though the amputation-type still makes up a fraction of a percent of amputations, it is hard to gauge how many rotationplasty procedures have been performed because of the absence of appropriate codes for recording this data (often getting lumped into other types of amputation categories and categories for prosthetics). This presentation asks us to think about agency, expertise, and experience in the context of this particular surgical procedure and reflects more widely on the relationships between surgeons, prosthetists, and patients in the material reality of bodies and artifacts.