How are the biological and cognitive sciences, as well as their application in various biotechnologies, reconstructing ideas of what it means to be human in the 21st Century?
Our work covers a wide range of topics from human enhancement, the biological embedding of social inequalities, the use of neuroscience in explaining social behaviour, and the application of new technologies in understanding health and disease.
The rapid growth of expensive “orphan” drugs for the treatment of rare diseases is being driven by novel business models in the biopharmaceutical industry, poses a series of major challenges for patient access to healthcare, and has become the subject of a high-profile controversy and policy debate over how they should be regulated. As a key term, 'orphan drugs' are a class of treatments for various rare diseases. Their development has been incentivised to address the needs of neglected patient groups. They are growing rapidly, highly profitable and stimulating new business models based on high cost products for niche markets. The very high price of some orphan drugs has led various countries to refuse to pay for them. This has provoked growing political concern that patients are being denied access to life saving therapies.
A major international debate is currently ongoing about how to improve access to orphan drugs, raising important questions about the value of these medicines and the ethics of resource allocation. Patient organisations have responded by sponsoring more sustainable, lower cost orphan drug development. Our project, funded by the Wellcome Trust, contributes towards this discussion. The project is titled 'Orphan drugs: high prices, access to medicines and the transformation of biopharmaceutical innovation' through which we will look systemically at the co-production of industrial and technological change, the politics and governance of orphan drugs, and new forms of collaborative knowledge production.
Examining these aspects, the Orphanisation project is innovative in developing a new concept (orphanisation) as a way of understanding contemporary changes in the biopharmaceutical sector. Specifically, the project examines the extent to which orphanisation occurring in the EU, UK, and USA. Also, how is it shaped by different technologies, institutions, and actors, addressing the implications for industry, health policy and patients?
- Being Human in Covid-19 Times
Over the last two years, iHuman has been leading the writing of a unique edited collection that reflects on Being Human During COVID-19. The book assembles an international, interdisciplinary group of writers and thinkers to reflect on the impacts and implications of the pandemic on people around the world. We have sought to produce a different type of academic book, grounded in cutting-edge scholarship but communicated in short and snappy chapters that get straight to the heart of the issue. Over the coming weeks, contributors to the book will be writing for us here on the iHuman blog, providing a taster of the book, and perhaps even persuading you to pick up a copy… We begin here with our editors’ overview of the big issues and ideas driving the book.
Fissures and fractures
The COVID-19 crisis poses massive challenges for many citizens, businesses, policymakers and professionals around the globe. The pandemic has highlighted pre-existing divisions
and inequalities in society, while also opening up new fissures and fractures. However, as many have commented, the crisis also presents new opportunities to fundamentally rethink many aspects of social, cultural, psychological and economic life. Three key issues
have emerged in this context that are fundamentally concerned with the experience, meaning and understanding of being human. Firstly, the marginalisation of many groups of people, most notably members of Black, Asian and minority ethnic (BAME) communities, disabled, young, older and displaced people and how they are valued and devalued in the response to the virus. Secondly, the role of new scientific knowledge and other forms of expertise in these processes of inclusion and exclusion. Thirdly, the remaking and reordering of society as a result of the pandemic and the opening up of new futures for work, the environment, culture and daily life.
Focusing on ‘the human’
The relevance and applicability of human and social sciences have been debated as we enter a period of knowledge generation that has emphasised the biomedical over the socio-political or psycho-political. These critical understandings of how we might better make the future are still missing from public discussion of the post-COVID world.
The focus on ‘the human’ as a central analytical heuristic is a defining feature of the approach taken here. This owes much to ideas coming out of the broader field of what has become known as the critical posthumanities. It is a diverse and unruly set of concepts and methods for understanding the human that share a common desire to unsettle traditional assumptions about what it means to be human, who is or is not in this category, and decentring the human as the focus of both scholarly attention and political practice. It also emphasises our entanglements with both other humans and various non- humans, including animals, the environment and technology. However, Being Human During Covid-19 does not simply just connect with the posthumanities, as it is more eclectic and open to other forms of scholarship grounded in both the social sciences and science, technology, engineering and maths (STEM) disciplines.
Covid-19’s window on society
These essays use COVID-19 as a means of exploring some of the central dynamics of power and knowledge at work in contemporary societies. This sheds light on the way in which the pandemic has reinforced existing inequalities, created new possibilities and remade ideas about the human. The pandemic has clearly transformed society: and we seek to understand this transformation in terms of negation and possibility. While the authors are from a wide range of backgrounds in the social and human sciences, humanities and STEM disciplines, we share a commitment to a more human future, one that challenges orthodox thinking and seeks to imagine how we can build a better world after the pandemic. The essays make use of a variety of sources: empirical studies of policy making, co-produced research drawing on the lived experience of marginalised groups, social media analysis, sociological theory, literature studies and work on new technoscientific knowledge. In doing so they start to address some of the most interesting and important questions about how we understand the contemporary human. These include:How is the human being conceived of in different domains by new forms of knowledge, political action and social norms? Where in the world is understanding of the human being expanded, contested, pushed back or unmade? Do variations exist in terms of place? Are particular notions of being human specific to the West or Global North? How are ideas of the human being regulated by government, private actors and civil society? Can we talk about an emerging post- COVID-19 human that is distinct from the pre- pandemic human? What sort of humans do we want to become?
Over the coming weeks, we will delve into these questions in more detail, providing new scholarship on what ‘being human’ means during a global pandemic, and how the repercussions of Covid-19 continue to shape societies over two years since the initial outbreak.
This post is an edited version of the Introduction from:
Martin, P., de Saille, S., Liddiard, K. & Pearce, W. (Eds.). (2022). Being Human During COVID-19. Bristol: Bristol University Press
- Science, Technology and Medicine in Society (STeMiS)
A number of iHuman sociologists are also members of STeMiS (Sociological Studies, University of Sheffield). Science, technology and medicine are pervasive parts of contemporary society. The STeMiS theme is interested in how knowledge is made, how technologies are developed, how these come to be employed in different settings and with what implications for social relations.
Our academic staff members working in this area are a vibrant and diverse group of researchers drawing on a number of sociological perspectives, but all share a common interest in the relationship between society and science, technology and/or medicine. Much of our work is inter-disciplinary and we have links with colleagues and networks across all faculties at the University of Sheffield.
Some examples of questions we are currently grappling with:How can data visualisations make data more accessible to ordinary citizens? What are the implications of new knowledge about the human body and brain and new technologies with the potential to change these for understanding what it means to be human? What does self-monitoring mean for the people who undertake it and what are the implications of self-monitoring practices for the wider provision of healthcare? How do ideas of race circulate in various biomedical contexts?
For more information on our work in STeMiS, please contact Dr Ros Williams: firstname.lastname@example.org or Dr Greg Hollin: email@example.com. We have an active mailing list, so please contact us if you’d like to be added.
Our major research areas include:Digital societies Sociology of Health and Illness Science and Technology Studies New materialisms and posthumanism
- How are visual technologies such as MRI changing medical practice and parents' experience of foetal and neonatal post-mortem?
- To what extent might digital media enhance bottom-up, patient-centred health practices?
- What assumptions about the good life, death and suffering underpin statutory measures of 'quality of life'?
How we understand being ‘human’ differs between disciplines and has changed radically over time. We are living in an age marked by rapid growth in knowledge about the human body and brain, and new technologies with the potential to change them.
The University’s four flagship institutes bring together our key strengths to tackle global issues, turning interdisciplinary and translational research into real-world solutions.