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Participation to build the bioeconomy
Anne Kerr
,
Choon Key Chekar
,
Emily Ross
,
Julia Swallow
, and
Sarah Cunningham-Burley

Genomic research, with the aim of developing personalised cancer therapies, is not just being pursued through trials or smaller-scale studies in cancer clinics and laboratories. It is increasingly taking place on larger, national and industrial scales too, as data is gathered en masse from patients and publics (Hilgartner 2017 ). In this chapter we investigate one such flagship national genomic sequencing programme to explore how genomic data, alongside other health and social data, is being gathered via mainstream

in Personalised cancer medicine
Gene-expression profiling in early-stage breast cancer
Anne Kerr
,
Choon Key Chekar
,
Emily Ross
,
Julia Swallow
, and
Sarah Cunningham-Burley

Breast cancer has long been a focus of research and innovation in genomic medicine, from one of the first targeted therapies, Herceptin, as discussed in Chapter 1 , to testing for mutations in breast cancer susceptibility genes such as BRCA1 and BRCA2, which developed through the course of the 2000s. Research into the molecular biology and gene expression of breast cancer tumours has spurred the identification of a range of variants or subtypes of breast cancer according to their molecular make-up. In addition to the development of Herceptin

in Personalised cancer medicine
The case of R337h in Brazil
Sahra Gibbon

Introduction The emerging relationship between genomics and a terrain of global health aligns arenas of social practice, cultural meaning and political value that might until recently have seemed antithetical. Developments in genomic research and medicine since the turn of the twenty-first century have long been associated with the promises of so-called personalized medicine, linked mostly to costly, high-end technological interventions focused on facilitating the choice of individual patients and their families who have

in Global health and the new world order
Anne Kerr
,
Choon Key Chekar
,
Emily Ross
,
Julia Swallow
, and
Sarah Cunningham-Burley

In this chapter, we explore how the promise and the work of personalised cancer medicine has evolved as genomic medicine has advanced. We trace some of the forms of value this has generated for patients and practitioners, industry and economies, and set the scene for our wider exploration of how this kind of future-crafting is reshaping the roles and responsibilities of cancer patients and practitioners. Drawing on a range of social scientific literatures and studies on genomic medicine for cancer, together with data from our own case studies

in Personalised cancer medicine
What Lessons Can Be Drawn from Case Studies in France, the United States and Madagascar?
Hugo Carnell

), ‘ Historical and Genomic Data Reveal the Influencing Factors on Global Transmission Velocity of Plague during the Third Pandemic ’, Proceedings of the National Academy of Sciences , 116 : 24 , 11833 – 38 , doi: 10.1073/pnas.1901366116 .

Journal of Humanitarian Affairs
Darryl Stellmach
,
Margaux Pinaud
,
Margot Tudor
, and
Larissa Fast

-Sharing Governance ’, Human Genomics , 12 , Art. 13 , doi: 10.1186/s40246-018-0143-9 . Khan , Z. H. , Iwai , Y. and DasGupta , S. ( 2022 ), ‘ Abolitionist Reimaginings of Health ’, AMA Journal of Ethics , 24 : 3 , 239 – 46 , doi: 10.1001/amajethics.2022

Journal of Humanitarian Affairs
Future crafting in the genomic era
Series: Inscriptions

What does it mean to personalise cancer medicine? Personalised cancer medicine explores this question by foregrounding the experiences of patients, carers and practitioners in the UK. Drawing on an ethnographic study of cancer research and care, we trace patients’, carers’ and practitioners’ efforts to access and interpret novel genomic tests, information and treatments as they craft personal and collective futures. Exploring a series of case studies of diagnostic tests, research and experimental therapies, the book charts the different kinds of care and work involved in efforts to personalise cancer medicine and the ways in which benefits and opportunities are unevenly realised and distributed. Investigating these experiences against a backdrop of policy and professional accounts of the ‘big’ future of personalised healthcare, the authors show how hopes invested and care realised via personalised cancer medicine are multifaceted, contingent and, at times, frustrated in the everyday complexities of living and working with cancer. Tracing the difficult and painstaking work involved in making sense of novel data, results and predictions, we show the different futures crafted across policy, practice and personal accounts. This is the only book to investigate in depth how personalised cancer medicine is reshaping the futures of cancer patients, carers and professionals in uneven and partial ways. Applying a feminist lens that focuses on work and care, inclusions and exclusions, we explore the new kinds of expertise, relationships and collectives involved making personalised cancer medicine work in practice and the inconsistent ways their work is recognised and valued in the process.

Anne Kerr
,
Choon Key Chekar
,
Emily Ross
,
Julia Swallow
, and
Sarah Cunningham-Burley

participation was troubled through the process of our own research and engagement practices and in the genomic technologies and initiatives we studied. In this chapter we explore how non-participation and limited participation in interviews and observations unfolded over the course of our project as a means of critically interrogating the participatory impetus in personalised cancer medicine, offering this as a useful counterpoint to the stories of participation we have presented thus far, and extending our analysis of the threads of resistance we have identified

in Personalised cancer medicine
Constructing population in the search for disease genes
Steve Sturdy

commonly state that it will generate genetic information that will help to combat illness and foster health in the countries under study. Thus the International HapMap Project is framed in terms of the ‘need to be inclusive in the populations that we study to maximize the chance that all people will eventually benefit from this international research effort’ (NIH News Advisory, 2002 ); while the African Genome Variation Project is presented as a step towards ‘provid[ing] a comprehensive resource for medical genomic studies in Africa’ (Gurdasani et al., 2015 : 331

in Global health and the new world order
How haplogroups are mobilised in the re-writing of origin stories in the Indian media
Devika Prakash

evident most famously in Germany's history of National Socialism and the idea of an ‘Aryan race’. This symbiosis is again made visible in the problem of the ‘non-white’ immigrants to European countries and the US, which reinforces the idea of a white nation (El-Haj, 2007 ; Schinagl, 2019 ). More recently, the focus of citizenship and belonging has been reframed within the language of genomics, as observed by scholars looking at Taiwan (Tsai and Lee, 2020 ), India (Subramaniam, 2019 ), South Africa (Erasmus, 2017 ), and Korea (Gottweis and Kim, 2009 ) within the

in Birth controlled