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Design, fiction and the medical humanities
  1. Christopher Gordon Strachan
  1. Correspondence to Christopher Gordon Strachan, 59 Merchiston Crescent, Edinburgh, Scotland EH10 5AH, UK; cgstrachan{at}gmail.com

Abstract

This paper sets out to explore the similarities between the developing discipline of speculative and critical design (SCD) and science fiction, and their relevance to the medical humanities. SCD looks beyond ‘commercial design’ to consider what sort of things we should, or should not, be designing in order to create preferable futures. It does so by extrapolating from current social, economic, political and scientific knowledge, designing artefacts, experiences and scenarios which communicate futures and alternative realities in tangible ways. By first outlying the relevance of SCD to the medical humanities, through its ability to imagine and visualise preferable healthcare futures, the paper will then discuss several recent design projects which focus on current and future ethical issues raised by emerging biotechnology. Through these projects, the paper will look at SCD's ability to provoke, engage and critique science and society, while also critically reflecting on the limitations of the evolving design discipline. Through the paper it is hoped that there can be an increased understanding of SCD and its ambitions, as well as its limitations, in order for SCD to better approach issues relating to health and wellbeing, along with other difficult and challenging issues which will affect all us today and into the (sci-fi) future.

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Introduction

Design is a tricky word. In one sense, and for many people, design is something that is tied to specific professions and the products of that profession: the designer as someone who designs nice chairs, lamps, logos, websites, buildings, clothing and so on. Examples of this form of design in relation to medicine and healthcare are products such as spectacles, hearing aids, wheelchairs, stethoscopes and hospitals. Yet, design has a broader, more complex meaning beyond the traditional functional, aesthetic and ergonomic concerns of designers in the past. The concept of something being ‘designed’ can also be applied to the design of our ways of living: our products and buildings are designed, as well as our political systems, economic institutions and healthcare services, all of which are social constructs designed by humans to manage our disputes, resources and health. Increasingly, designers are applying their methodologies and creative thinking to political, economic, social, environmental and technological issues that were once not part of their remit. In this sense, design can be seen ‘as an activity seeking to change existing situations into preferred ones’.1

But how can we decide what is ‘preferable’? How can we determine what is good design beyond the aesthetically pleasing, ergonomically comfortable, functionally useful or economically viable? One way, which will be explored throughout this essay, is that contemporary design practice can, in a similar way to science fiction, help us to envisage the design of possible futures in tangible and experiential ways, helping us to collectively explore what is or could be preferable or non-preferable. In this way, designers are beginning to apply their skills to more socially complex issues by envisioning the near-future implications of technological and scientific developments, economic paradigm shifts, political movements and environmental crises. This new interdisciplinary design practice has, at different times, been referred to as Design Fiction, Speculative Design, Critical Design and Speculative AND Critical Design (SCD). Some critics see these as distinct disciplines with potentially significant differences,2 while others argue that they offer nothing new that design does not already do (or at least should be doing).3 Nevertheless, in this paper I will be focusing on many of the qualities—good and bad—which they share and will use the term SCD to cover these commonalities.

I will begin by first considering what the Medical Humanities are and what they hope to achieve. I will then go on to show how the science fiction nature of SCD and its method of asking questions rather than providing answers allows moral and ethical concerns to be raised through the design of speculative and provocative scenarios and artefacts.4 Projects which explore emerging issues and technologies impacting medical practice and healthcare services—such as synthetic biology, genetic tagging, the future of the National Health Service (NHS) and child birth—will then be discussed. This will show the fertile ground that could grow between healthcare practitioners, medical scientists, patients and designers as they consider what are preferable and non-preferable healthcare futures. Throughout the essay, I will also explore the limitations of SCD as it is now. In particular, (1) its tendency to deal with ‘first world problems’, that is, near future concerns which will only affect a minority of wealthy Westerners; (2) its lack of public engagement, both in its process and outcome; (3) its fetishisation of technology over other viable alternatives and (4) its unwillingness to actually make difficult decisions—or designs—that will enact change. This critique is offered to examine how this new design practice could evolve to open up alternative ways of structuring our lives and our societies, thus enabling us collectively to determine, through active participation, what is preferable and how we can move towards it. Such a process would help us to better approach issues relating to health and wellbeing, along with other difficult and challenging issues which will affect all of us today and into the (sci-fi) future.

The medical humanities (and science fiction)

The medical humanities is, as a recognised academic discipline in itself, relatively young, although artistic and creative endeavours that seek to understand health and well-being have existed long before their university institutionalisation.5 As an interdisciplinary area of research, its approaches and ambitions are often varied and hard to pin down, involving disparate areas of medical research and practice, such as art therapy, literature and film studies, philosophy and anthropology, to name but a few. Nevertheless, as Downie and Macnaughton make clear, the arts and humanities have come to play an important critical role in the public understanding of medical practice and in the education of healthcare professionals by challenging existing perspectives and attitudes: the arts and humanities can, they state, ‘provide a reasoned ethical critique of the nature of contemporary medicine and make suggestions about the directions in which it ought (and ought not) to go; and they can enrich the ethical judgements of professionals by assisting them to develop a broad and humane perspective’ (p. 2).5

Underlying such a multifaceted discipline, as stated by the Durham University, Centre for Medical Humanities, is an attempt to look at the ‘human side of medicine’, not merely the scientific or technical.6 By looking at medical practice in such a way, the humanities ‘have a key role to play in analysing our expectations of medicine, and the relationship between medicine and our broader ideas of health, well-being and flourishing’.6 It is therefore much needed in an inquiry into the broader context and understanding of what we hope to achieve through medicine and healthcare, and even what we mean when we refer to health, care, doctor, treatment and so on.7

Science fiction as a genre of human imagination has provided the opportunity for creative thinkers to explore issues such as these, as well as the overarching ambition and methods of medical science. Ever since Mary Shelly's Frankenstein, the potential for medical science to be hubristic in its quest to cure humankind of all its inefficiencies has provided ample ground for science fiction thinkers. By extrapolating from current world issues and scientific knowledge, science fiction presents ‘a reflection of contemporary cultural values attributed to technology’.8 As the medical humanities attempt to make medical practice more reflective and reflexive, and healthcare more humanistic rather than scientific, the science fiction narrative provides a medium in which our values and current hopes and fears can be projected into an alternative, often future, context to help us view them from another perspective. Science fiction of this kind is not concerned with Space Operas of the far future, but with the consequences of difficult decisions we may have to make tomorrow. As Joan Slonczewski, scientist and sci-fi writer, and Michael Levy, professor of English Literature at the University of Wisconsin-Stout, state in their chapter ‘Science Fiction and the Life Sciences’9:The quest for outer space has given way to the quest for the genome. The great adversary is no longer an alien superpower, but the enemies within—cancer, AIDS, and bio-weapons—as well as the accidental results of genetic manipulations, and our own lifestyle destroying our biosphere.

Furthermore, the medical humanities are attempting to uncover and reflect upon the underlying perspectives and attitudes behind our culture of healthcare, whilst also attempting to understand the users' or patients' perspective in order to provide a more holistic and considered provision of care.7 Traditional medical education and practice has not been well placed to look at the concerns of the patient in this way, hence the necessity for the medical humanities to incorporate other fields of research and expression into the medical experience in order to create an interdisciplinary base of knowledge which can explore both the ethics of medical practice and the relationship between professionals and patients. As will be shown, there is a real opportunity here for SCD, when combined with participatory design methodologies, to explore and critique the ethical assumptions which will impact the future of healthcare, while incorporating the users' perspective to consider how medical practice, education and the patients' experience can be improved.

Design fiction and speculative and critical design

Design has long been intertwined within the capitalist system, designing both things that can sell and make a profit in the market and designing advertising and marketing campaigns to help these things sell. Although there have always been designers who have questioned the ethics of ‘capitalist design’—such as William Morris or Buckminster Fuller—in recent years design has again been questioning its own role, considering whether its methodologies could not be used for more social and less commercial causes.4 ,10 ,11 As a result, the spectrum of design has become more wide-ranging, with new and cross-disciplinary practices emerging, such as service design, human-centred design, interaction design and design ethnography.

SCD emerged in the late 1990s as a practice which has proved influential, particularly in design academia, in: (1) critically reflecting on the role of the designer and their designs and (2) using design as a tool to critique the design of society by presenting provocative, often future, alternatives to the status quo.4 ,12 What differentiates SCD from other design disciplines is that its ‘products’—or outcomes—are provocative artefacts designed not to be functionally useful but ‘designed for debate’. That is, in the same way that science fiction acts as a lens through which to analyse our cultural values and probe ‘the social consequences of new technologies’,8 SCD produces artefacts—similar to cinematic props—from the future and alternative realities. These provocative artefacts and accompanying scenarios aim to raise questions about the impact new technologies and designs could have on our political, economic and social systems, and ultimately on our values and behaviours.

Designers speculating on the future in itself is not new. For much of the 20th century architects and designers presented conceptual models of ‘utopian’ worlds. SCD, on the other hand, is more engaged with the ‘real world’ and its lack of clarity, than the utopian vision, looking instead to the seemingly familiar, even mundane, things we use day-to-day, rather than a Le Corbusian remodelling of the architecture of life. As technologies develop, the everyday things we use are becoming more advanced, changing many of our daily actions and interactions. And here is where SCD comes in: if these designed ‘things’ are increasingly influential within our everyday lives, then we need to consider whether they have a good or bad impact on our lives and the planet.

Again, the question of what is ‘good’ or what is ‘preferable’ raises its philosophical head. In the past, attempts to reach conclusions to similar ethical questions within medical practice have often been made through various thought experiments, such as Judith Jarvis Thomson's Trolley or Transplant Problem, where utilitarian arguments question whether killing one life to save five could ever be justifiable.13 SCD attempts to create similar ethical thought experiments, but in material ways. By opening up provocative and speculative possibilities, the social consequences and ethical dilemmas that may emerge from the design of new things, as well as the social context from which such design originates, can be debated, allowing us to determine what is a preferable or non-preferable future. What makes SCD interesting, and perhaps more provocative than science fiction in literature or film, is that as a design discipline it creates an understanding that the future, what is or is not designed, is not predetermined and could be designed by us.

As interaction designers Tony Dunne and Fiona Raby, two of the most prominent figures in the development of SCD, state in Speculative Everything: Design, Fiction and Social Dreaming, their practice is not interested ‘in trying to predict the future but in using design to open up all sorts of possibilities that can be discussed, debated and used to collectively define a preferable future for a given group of people: from companies, to cities, to societies (p. 6).4 In this way, SCD aims to make the future democratic by allowing us to all have a say over its design. This is a very necessary and important principle which could present SCD as a platform to give citizens agency over their future, and within healthcare practice it could be used to help determine what citizens and patients desire from their doctors, nurses, services and technologies.

Despite Dunne and Raby’s influential work in questioning the role of designers and their designs in relation to the status quo, some of their work, and other similar projects from other designers, fall short both in their process and outcome to achieve this democratic principle. This is first due to the fact that their design process itself is not participatory; although they may consult and collaborate with scientists, technologists and professionals, they do not include the input of the public in their designs, instead relying on their own intellect and creativity to design provocations and speculations. If SCD is to be a tool to determine what is a preferable future then public, not just expert, concerns need to be incorporated into the design process. Second, SCD outcomes are exhibited predominantly within art galleries and museums, places which are not frequented by those from disadvantaged social and economic backgrounds.2 If SCD aims to make the future more democratic, then it is not enough just to present provocative scenarios and artefacts to a particular (intellectual and wealthy) demographic who attend art galleries; these projects need to be brought out of galleries and into communities. Nevertheless, when speculative design is combined with participatory and co-design methodologies, it can help people—non-designers—to consider and visualise the future, not as some abstract, scary and oppressive concept, but as something inevitable that we can help to shape. For the remainder of this essay, I will show how the provocative nature of several speculative design projects, all of which engage with emerging biotechnology, present visions of the future that can help to reflect on the current direction of medical science.

Design meets medicine: case studies

(Im)possible baby—design as provocation

Speculative designer and member of the Design Fiction department at the Massachusetts Institute of Technology, Ai Hasegawa has developed a number of projects that consider the future of child birth and the nuclear family, raising critical questions on gender, our notion of what a ‘traditional family’ is and what ‘natural’ means in such a context. The (Im)possible Baby, Case 01 Asako & Moriga is ‘a speculative design project which aims to stimulate discussions about the social, cultural and ethical implications of emerging biotechnologies that could enable same-sex couples to have their own genetically related children’.14 Drawing on recent scientific discoveries in genetics and stem cell research, Hasegawa considers a near future world where a homosexual couple can have genetically related children. By looking at the DNA of an existing lesbian couple, Hasegawa uses digital technologies to ‘design’ their children, considering what their features and characteristics could be based on their ‘parents’ shared DNA. Hasegawa then visualises the family with their young children in a fictional family photo album.

Such technology, if available in the future, would prove extremely controversial for people all over the world. For some, having a child regardless of sexual orientation should be considered a human right, for others it would be unnatural and an attempt to play God. By visualising this future and provoking discussion, Hasegawa questions whether ‘“creating a baby from same-sex partners is the right thing to do?” and “who has the right to decide this, and how?”’.14 Many questions arise from this project: What new political and religious groups would emerge? What new laws? How would these ‘designed’ children be treated? Would parents protest genetically engineered children coming to their own ‘natural’ children’s schools? By designing this future in a tangible way the social and ethical questions that surround advances in medical technology become contextualised and less abstract, as we can see the (fictional) happy family eating and playing together.

However, the context of how this future is presented is not neutral and perhaps too simplistic: what if the photo album instead showed the children and family being subjected to abuse and treated as second class citizens? Furthermore, who would have access to this genetic technology? The designed scenario presents the fictional family as economically wealthy. Yet this raises the question of whether the technology would only be available to the affluent citizens of the developed world, who can design healthier, stronger and cleverer children.

The dominant users presented in the majority of SCD projects are not those from poorer socioeconomic backgrounds and issues of inequality and disadvantage can easily be forgotten, as new technologies are often only accessible to those who can afford them. This is an argument placed by design theorist and critic of SCD, Cameron Tonkinwise, who claims that too often these future scenarios focus on the needs of white affluent citizens from economically rich countries.15 With infant mortality rates still unacceptably high in economically poor countries throughout the world, for many the idea of homosexual or heterosexual ‘designer babies’ is not a priority. Instead, the question of how to provide basic levels of paediatric and neonatal care for patients in low-income countries is a design and medical problem which is far more pressing. Even within economically rich countries, rates of infant mortality differ between rich and poor.16 Tonkinwise claims that many of these projects conceal the fact ‘that there are problems today that not all of ‘Us’ face’. He states that ‘there are people who benefit—from what is available on the market, from technoscientific advances; and then there are people who most definitely do not get to enjoy those benefits’.15 As William Gibson famously said, “The future is already here—it's just not evenly distributed.”

Poor health and a shorter life expectancy are in many cases the direct result of economic and social disadvantage. Although Hasegawa's project raises very important questions about how medical science may affect gender and sexual equality in the near future, there is a need for SCD, and design in general, to disregard the needs of wealthy elites and instead focus on expanding the range of possibilities for the disadvantaged, disabled and exploited, pushing towards an equally distributed healthy future.

Material Beliefs—design as engagement

The Material Beliefs project was a 2-year collaborative research project between four designers based at the Interaction Research Studio, Goldsmiths, University of London, who ‘developed relationships with biomedical and cybernetic researchers at UK labs and institutes, guiding a design process in which unfinished scientific research became embodied in speculative products’ asking ’what role biotechnology will play in everyday life’.17 The aim of this project was to produce prototypes, exhibitions and debate that would take scientific research out of laboratories into public spaces. A key reason for this project is a report from the House of Lords Select Committee on Science and Technology, on the relationship between science and society. The report stressed that ‘non-experts should be able to understand aspects of science and technology which touch their lives’, and that scientists should see themselves as ‘civic scientists’, who seek to understand the impact that their work will have on society and public opinion (p. 8).17

In contrast to Hasegawa's (Im)possible Baby, the Material Beliefs research phase included engagement with scientists and citizens, holding workshops in schools and debates and discussions in public centres and festivals on how biotechnology and cybernetic technology may influence them. Such engagement acted as a form of qualitative research, providing insight from which designers drew inspiration for their speculative products. If we are to take Dunne and Raby's democratic ambition as a key principle of SCD—that it allows us to collectively consider what a preferable or non-preferable future is—then a participatory process such as this is vital. As new technologies and designs, medical or otherwise, are playing an increasingly influential role in our lives, philosopher of technology Peter-Paul Verbeek argues that designs ‘cannot be left to the responsibility of individual designers’ or scientists.18 Langdon Winner, also a philosopher of technology, argues that the ‘greatest latitude of choice’ for directing how designs will impact society ‘exists the very first time a particular instrument, system, or technique is introduced’.19 Winner therefore states that, ‘technological innovations are similar to legislative acts or political foundings that establish a framework for public order that will endure over many generations’. From this point of view, it can be seen as a democratic right that people should be able to shape the design of things which in turn shape them.

There were multiple outcomes to the Material Beliefs project, including: The Vegetarian Tooth implant which questioned ‘Can our tooth structure be modified, to reflect and enhance our dietary preferences?’; a similar Sagb Table Set which proposed ‘restrictive utensils that can help to reduce the amount of food intake’ and the Vital Signs—Cotton Wool Kids, a biometric implant monitor for anxious parents (pp. 61–180).17 It may be unfair of me to criticise a project whose purpose it was to inquire into scientific research for focusing too much on science and technology, yet the criticism is placed on SCD as a whole. With SCD, as with healthcare, there is a tendency for us to look to science and technology for answers when non-technological solutions are worth being explored. A similar argument is put forward by Charley Baker, Paul Crawford, Brian Brown and Victoria Tischler, all academics working within the medical humanities, who assert that the term ‘Medical’ Humanities itself shows a bias towards ‘the dominant force of the discipline’, of the medical sciences rather than other forms of healthcare provision.7 They instead suggest that ‘Health Humanities’ would be a better term to encompass the complexity of heath and well-being.

As SCD looks to the future it is prone to focus on a techno-scientific future, however, as technology solves problems it often simultaneously creates new ones. Today, we fetishise technology, but we should also be wary of it. Should we not look to green futures and low-tech futures to explore all possibilities? Despite Dunne and Raby's claim that the ambition underpinning SCD is to challenge the supposedly objective assumption, made famous by Margaret Thatcher, that ‘there is no alternative’ there seems to be no alternative to the inevitable ‘progress’ of technology.4 Although it is a worthwhile cause to dispel misunderstandings and knee-jerk reactions to scientific research through engagement and public discourse,20 there are, as always, competing interests and values in society and technological concerns are legitimate and should be given a voice.

Dynamic genetics versus Mann—design as social criticism

Dynamic Genetics versus Mann by Superflux, a London-based design studio, is a project which gives voice to such concerns by speculating on decreased public spending and the future of the NHS; the relaxation of laws on genetic profiling, gene therapy and synthetic biology; the opaque nature of big data and; the inequalities and illegalities that may emerge as a result of these social changes. The project was intended to ‘explore both the future ‘real world’ implications of synthetic biology as well as examine and unpack some of the related trends that are shaping our world today’.21 Ultimately, the project, as with many other SCD projects, aimed to do what writer Frederik Pohl said good science fiction should do: ‘predict not the automobile but the traffic jam’.

In order to explore these themes, Superflux designed a future scenario based around a fictional court case between a private gene therapy company Dynamic Genetics and the defendant, Arnold Mann. In this future world, the NHS has evolved into the National Health Insurance (NHI) who is responsible for determining the insurance premium of UK citizens based on genetic factors. After his insurance premiums go up due to ‘elevated risk factors’, Mr. Mann is forced to look to the black market for genetic treatment. After being caught out using stolen equipment, he is brought to court to face charges. Superflux present this project through designed artefacts—the fictional ‘evidence’ brought against Mann—in things such as forensic photographs, the NHI Spit Kit which caught Mann out, surveillance photographs and a search warrant to check Arnold Man's genetic information. By focusing on the illegal use of new technology and the users who lose out due to political, economic, technological and social factors out of their control, Dynamic Genetics versus Mann explores issues of inequality and privatisation which are of concern today. The designed fiction and artefacts, as with the previous projects, contextualise and communicate these techno-scientific concerns in a way that highlights the influence emerging biotechnologies could have on our healthcare services.

In contrast to the other projects discussed, which are all academic endeavours, Superflux are a design studio that work with paying clients. Despite the fact that this project was self-initiated, Superflux are attempting to bring SCD into the mainstream as it could prove useful for businesses, public services and communities to design and visualise future scenarios in order to help reflect on the here-and-now and give direction to current and future decisions. However, despite the fact that this project looked at the disadvantaged user, the Dynamic Genetics versus Mann project was exhibited in a gallery. As previously stated, this is one of the biggest criticisms of SCD: that the majority of SCD projects sit within elitist galleries and museums, and science merely comes out of the lab and into the gallery.2 Presenting provocations about the future of the NHS and genetic tagging in galleries may raise awareness of important issues, but this debate does not translate into democratic decision-making, especially when the debate is only taking place among certain intellectual circles.

The New York-based futures/design studio, The Extrapolation Factory, provide an interesting model which could enhance SCD practice, making it more participatory and inclusive. The Extrapolation Factory facilitate workshops where participants rather than designers, scientists or technologists, speculate on the future. Workshop participants then design future products and artefacts which are displayed in public spaces, such as 99c stores and vending machines.22 The design process is participatory, and the speculative artefacts—such as a ‘Home Transplant Kit’—are exhibited outside of an exhibition context, allowing the passing public to engage with the provocative ideas. The participatory process and inclusive method of exhibiting designed provocations can be seen to be pushing SCD towards the democratic principle, which Dunne and Raby claim is at the heart of future-orientated design thinking. Presenting SCD projects that deal with healthcare and medicine in hospitals or general practitioners surgeries, where the responses of the general public can be gauged, is more relevant and inclusive (and perhaps even more provocative).

Conclusion: where next? Participatory speculative and critical design

Even as a moderately young discipline, SCD is attempting to shift the parameters of design to consider the broader social context of the designer and the impact that social, political, economic and technological changes (or designs) will have on our future values and behaviours. We are currently living in a time of great uncertainty and it is therefore more pressing than ever to question the future direction and ambition of our institutions and services. Biotechnology, austerity, the potential privatisation of our social services, an ageing demographic, obesity and global population growth are all challenges we will face in the near future. As has been shown, however, there is potential for designers and medical scientists, academics, therapists, doctors, nurses, patients, politicians and the public, to work together, using participatory SCD methodologies to think collectively about the future of medical practice, challenging many ethical assumptions and perceptions, to creatively re-imagine what a preferable healthcare future would look like.

The projects highlighted in this paper all focus on the future, and potentially controversial, application of new medical technologies. However, do we want technology to be the driving force in every aspect of our lives? The underlying assumption behind SCD is that these projects don't just visualise potential futures, they shape them.23 Such a claim has always followed the science fiction genre.24 Yet, if visions of the future can influence the future itself, we need to decide whether we should portray provocative technological futures, or imagine social futures, green futures, egalitarian futures and healthy futures. The two are not contradictory, but emphasis is key. For instance, Cameron Tonkinwise suggests that designers should put their heads together to ‘Design Away’ things, rather than design more things; to develop ‘a deliberative strategy to undesign, to make existing designs disappear’.25 In healthcare, we need to design away unhealthy lifestyles and the causes of mental illness, not design the future equivalent of gastric bands and the antidepressant. Such an ambition could push medical practice towards a holistic rather than scientific concept of healthcare provision.

Sociologist Bruno Latour argues that today, nothing can be considered a matter of fact and instead must be considered a matter of concern.26 As has been shown, design can open up the space for ‘matters of concern’, allowing alternative possibilities to be considered: the future of healthcare is not predetermined. However, the influence that SCD projects could have in shaping the future are extremely hard to quantify. There is a strong argument that design needs to provide more than just provocative scenarios or fictional artefacts for, as designer Elio Caccavele and sociologist Tom Shakespeare say, it can be considered ‘a cop-out, to be always asking questions rather than giving answers’ (p. 35).20 Nevertheless, I would argue that such projects have great value as a starting point for the consideration of designs that first imagine change, and then implement it.

References

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Footnotes

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.