Adaptive trials for intractable cancers
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

. As we discussed in Chapter 1 , randomised control trials (RCTs), the ‘gold standard’ of evidence-based medicine, have been superseded by what Keating and Cambrosio ( 2011 ) describe as a ‘new style of practice’ in medical oncology, based on large trials across multiple sites to develop targeted therapies for subtypes of cancers based on genomic profiling. Multi-arm trials test several different treatments at once. If a particular drug is not proving efficacious the trial arm can be closed and new treatment arms brought in (Medical Research Council 2014 ; West

in Personalised cancer medicine
Theatre of Debate
Simon Parry

the life sciences through dramatic narratives, examining the way the practice has engaged with genetics and genomics. In the second half of the chapter, I extend my discussion of Theatre of Debate as a dramaturgical approach, outlining further aspects of the process and how it constitutes an intervention into education that values and promotes embodied knowledge, what I call, following Rose, ‘somatic expertise’. In these sections, I describe the development of a specific project Theatre, education and the politics of life itself 95 dealing with the politics of

in Science in performance
Dorothy Porter

psychopathology was contested throughout the latter half of the twentieth century, but the dopaminergic neurobiology of the brain became central to genomic research on cognitive and emotional variation from the 1990s. 34 The discovery of dopamine in Parkinson's Disease not only provided an explanation of motor dysfunction, but also created an opportunity to examine psychological aspects of the disease and revived interest in the idea of a ‘Parkinson's personality’. Carl Dudley Camp

in Balancing the self
Open Access (free)
Digital culture and personalised medicine
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

Tensions around the value generated by the complicated nexus of private, public and industry arrangements of large-scale genomic sequencing initiatives can also be found in the wider political economy of targeted therapies. Personalised cancer drugs promise cures and economic growth. But their expense presents a problem for healthcare providers and patients alike. Recent reports suggest that in one of the largest markets, the USA, spending on cancer drugs in the genomic era has increased dramatically – rising from $26 billion in 2012 to more

in Personalised cancer medicine
From theory to advocacy
Andrea Boggio and Cesare P. R. Romano

the Vienna Convention on the Law of Treaties, Donders (2011) argues that the inextricable link between the right to science and the right to health determines the positive and negative obligation of states. Scholars have also begun investigating what implications for policymakers can be derived from applying the human rights framework to the analysis of those issues. Knoppers et al. (2014) frame their proposal for an international code of conduct enabling global genomic and clinical data sharing for biomedical research with reference to the right to science and the

in The freedom of scientific research
Open Access (free)
Simona Giordano, John Harris, and Lucio Piccirillo

society as a whole, and can even guarantee greater peace, in that it allows us to overcome certain moral and psychological boundaries (as Piccirillo notes in Chapter 8 of Part I) and recognise the equal value of others. There are many specific areas of the regulation of science that this volume has left unexplored – genetics and genomics, research using non-human animals, biology (particularly synthetic biology) – and it will be interesting to evaluate how regulatory mechanisms will apply to artificial intelligence. Our aim is not to explore all areas of science that

in The freedom of scientific research
Open Access (free)
Reflections on the politics of openness in a new world order
Alexander Thomas T. Smith

Useful Evidence; Institute for Government; and Sciencewise. Turner, S. (2003). Liberal Democracy 3.0: Civil Society in an Age of Experts. London: Sage Publications. University of Manchester, Institute for Science, Ethics and Innovation (2010). Who Owns Science? The Manchester Manifesto. Retrieved 14 December 2016 from: www.isei.manchester.ac.uk/TheManchesterManifesto.pdf. Watermeyer, R. (2012). Written Evidence Submitted by ESRC Centre for Economic and Social Aspects of Genomics (Cesagen) Cardiff University (PE 01). Commons Select Committee, Public Administration

in Science and the politics of openness
Maintaining trust
Heidi Mertes

stem cell research from patentability. References Baltimore, D., Berg, P., and Botchan, M. et al. (2015) ‘A prudent path forward for genomic engineering and germline gene modification’, Science, 348.6230: 36–8. de Lacey, S. (2006), ‘Embryo research: is disclosing commercial intent enough?’, Human Reproduction, 21.7: 1662–7. Deglincerti, A., Croft, G. F., and Pietila, L. N. et al. (2016), ‘Self-organization of the in vitro attached human embryo’, Nature, 533: 251–4. Devolder, K. (2012) ‘Against the discarded–created distinction in embryonic stem cell research’, in M

in The freedom of scientific research
New roles for experts and publics
Sarah Hartley and Adam Kokotovich

. (2005). Adjudicating the GM food wars: Science, risk, and democracy in world trade law. Yale Journal of International Law, 30, 81–123. Wynne, B. (2006). Public engagement as a means of restoring public trust in science: Hitting the notes, but missing the music? Public Health Genomics, 9(3), 211–220.

in Science and the politics of openness
Open Access (free)
Ash dieback and plant biosecurity in Britain
Judith Tsouvalis

, desperate measures were therefore in order. For example, in December 2012, the open-source platform OpenAshDieBack (oadb.tsl.ac.uk) was launched. It had been designed by scientists from the John Innes Centre in Norwich, and invited scientists from around the world to share scientific data on Chalara. This unconventional step of rapidly generating and releasing genomic sequence data was premised on the understanding that ‘to foster open science and make it possible for experts around the world to access the data and analyse it immediately [would] speed up the process of

in Science and the politics of openness