Spliced: Boundary-work and the establishment of human gene therapy

Addison, Courtney

doi:10.1057/biosoc.2016.9

Cited by 16 publications

(13 citation statements)

References 79 publications

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“…it was not technically feasible) and partly moral (i.e. it was seen as immoral to introduce changes that would have been inherited by future generations) [ 36 , 37 ]. Modifying the human germline is seen as problematic because of the unforeseen effects on future generations, the risk of engaging in a form of new eugenics, the risk of sliding down a slippery slope to human enhancement, and other similar arguments [ 38 – 40 ].…”

Section: The Reasons In Favour Of Extending the Limitmentioning

confidence: 99%

A 14-day limit for bioethics: the debate over human embryo research

Cavaliere

2017

BMC Med Ethics

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BackgroundThis article explores the reasons in favour of revising and extending the current 14-day statutory limit to maintaining human embryos in culture. This limit is enshrined in law in over a dozen countries, including the United Kingdom. In two recently published studies (2016), scientists have shown that embryos can be sustained in vitro for about 13 days after fertilisation. Positive reactions to these results have gone hand in hand with calls for revising the 14-day rule, which only allows embryo research until the 14th day after fertilisation.Main textThe article explores the most prominent arguments in favour of and against the extension of the 14-day limit for conducting research on human embryos. It situates these arguments within the history of the 14-day limit. I start by discussing the history of the 14-day limit in the United Kingdom and the reasons behind the decision to opt for a compromise between competing moral views. I then analyse the arguments that those who are generally in favour of embryo research put forward in support of extending the 14-day rule, namely (a) the argument of the beneficence of research and (b) the argument of technical feasibility (further explained in the article). I then show how these two arguments played a role in the recent approval of two novel techniques for the replacement of faulty mitochondrial DNA in the United Kingdom. Despite the popularity and widespread use of these arguments, I argue that they are ultimately problematic and should not be straightforwardly accepted (i.e. accepted without further scrutiny). I end by making a case for respecting value pluralism in the context of embryo research, and I present two reasons in favour of respecting value pluralism: the argument of public trust and the argument of democracy.ConclusionI argue that 14-day limit for embryo research is not a valuable tool despite being a solution of compromise, but rather because of it. The importance of respecting value pluralism (and of respecting different views on embryo research) needs to be considered in any evaluation concerning a potential change to the 14-day rule.

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Section: The Reasons In Favour Of Extending the Limitmentioning

confidence: 99%

A 14-day limit for bioethics: the debate over human embryo research

Cavaliere

2017

BMC Med Ethics

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“…This holds especially true for gene therapy, which has been in development since the early 1990s. Despite such a long trajectory, clinical trials still in development, and the deaths of two patients on separate occasions (Addison 2017), recent advances in the field of targeting and delivery of viral vectors have left pharmaceutical companies scurrying to patent various forms of gene therapy for the treatment of diseases.…”

Section: Thinking the Breakthroughmentioning

confidence: 99%

“…This is also the case for those seeking gene‐therapy treatment. Gene therapy is a technology that involves the introduction of therapeutic genes into the human body to replace mutations causing disorders (Addison 2017). In the case of thalassemia, the introduction of healthy genes could help patients' bodies begin producing hemoglobin at higher rates, thereby eliminating or reducing the need for regular blood transfusions and dialysis.…”

mentioning

confidence: 99%

Directing the Future of Gene Therapy in Cyprus: Breakthroughs, Subjunctivities, and the Pragmatics of Narrative

Kyriakides

2018

Cult. Anthropol.

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Gene therapy is a technology that involves the introduction of therapeutic genes into humans for the replacement of mutations causing disorders. This article stems from research conducted with a thalassemia patients’ association in Cyprus and explores how political and epistemic uncertainty surrounding the promise of breakthrough in gene therapy is harnessed to particular objectives and narratives for the future. Anthropologists who survey the future largely address the manner in which people orient themselves in conditions of uncertainty through concepts of hope, waiting, patience, and endurance. Less attention has been paid to how people construct and deploy narratives and images of the future in a way that can bridge present immediacy and abstract futurity—a process I call directing the future. The concept I use to elucidate the connections between breakthrough and narrative is that of subjunctivity. In juxtaposing different positionalities that thalassemia patients in Cyprus adopt with regard to the promise of gene therapy, I show that subjunctivity is not only the ability to be receptive to transformation and the possibility of a world otherwise. The intersubjective and political processes out of which subjunctivity and narrative emerge are also the processes by which an otherwise undefined future becomes ordered, and certain images of the future attain more gravity and reality than others.

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“…It also is not to "reduce ideologies of science to illusions concocted only to serve professional interests", as that "assumes an unrealistically gullible public and a cynical and merely instrumentalist scientific community" (Gieryn, 1983). Rather, it is to contest how contemporary, reductionist understandings of "scientific objects, practices and disciplines […] come to be black boxed, clothed in illusions of inevitability, timelessness and cultural neutrality" (Addison, 2017).…”

Section: Boundary Workmentioning

confidence: 99%

“…By recognising the contingency of scientific authority to socio-political environments and eras, the theory of boundary work can be used to identify who or what is elevated in society, and likewise compromised, by these ongoing, dynamic efforts to reveal how science can produce "new kinds of people and forms of life" as a result (Addison, 2017).…”

Section: Boundary Workmentioning

confidence: 99%

Uniting against COVID-19: What our national pandemic response could reveal about science and society in Aotearoa New Zealand

Bowatte¹

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Writing in 1954, Hannah Arendt describes crises as an “opportunity[…]to explore and inquire into whatever has been laid bare of the essence of the matter”. Globally, the COVID-19 crisis has torn away at existing facades, bringing to light not only taken-for-granted structures and processes, but new ways of conceptualising them. Currently, Aotearoa New Zealand’s national pandemic response to COVID-19 is one of the most highly regarded in the world. This success has predominantly been attributed to our government’s receptivity to the advice of scientific experts. This research thesis therefore endeavours to understand the nature of our ‘science-based’ response. Drawing on semi-structured interviews with fourteen scientific and non-scientific actors involved in our national COVID-19 response, this research investigates how science is involved in interactions between scientists, government and the public, and how it is involved in the way those social groups interact with the underlying systems that produce and maintain our modern society in Aotearoa. Where those systems typically underlie structures and processes of modern Aotearoa, Thomas Gieryn’s theory of ‘boundary work’ is used to draw attention to how typically invisible relationship networks between scientists, scientific knowledge-making processes, scientific legacies of colonialism, and systemic weaknesses in our health and scientific infrastructure have been rendered visible by Aotearoa’s national response to this crisis. By recognising the dynamics of our national response, including factors that enabled and restrained important strategies, this research provides insights into our so far successful crisis response that can be utilised for crises responses in the future.

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Spliced: Boundary-work and the establishment of human gene therapy

Cited by 16 publications

References 79 publications

A 14-day limit for bioethics: the debate over human embryo research

A 14-day limit for bioethics: the debate over human embryo research

Directing the Future of Gene Therapy in Cyprus: Breakthroughs, Subjunctivities, and the Pragmatics of Narrative

Uniting against COVID-19: What our national pandemic response could reveal about science and society in Aotearoa New Zealand

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