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- Convenor:
-
Isabel Briz Hernandez
(The Chinese University of Hong Kong)
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- Format:
- Traditional Open Panel
Short Abstract:
This panel invites papers that reflect on how doubt and uncertainty are present in the making of promissory technologies such as gene and cell therapy, stem cell, or personalized medicine in general; and how those moments in which hype is contested are also constitutive practices of technoscience.
Long Abstract:
Much has been said about hope and science. Since the emergence of biotechnology and its promises of a not-distant-future in which the advances at the bench will quickly travel to the care at the bedside, scholars in science studies have warned about the hype around biotech and the deceiving illusion that it creates in patients at their most vulnerable moment, at the edge of life (Good 2007; Rose and Novas 2005). It has been widely portrayed how hope is capitalized by biotech companies and nation-states, turning the expectations of patients and their families into an economic profit (Novas 2006; Sunder Rajan 2005, 2006, 2010; Waldby 2000). Others have urged us to look at how the idea of potentiality has impregnated life science and biomedicine in the last decades (Taussig, Hoeyer, and Helmreich 2013). Yet, an emerging scholarship is also pointing to how this hype is “recalibrated” on the ground (Gardner, Samuel, Williams 2015) and how high and low expectations are intertwined (Pickersgill 2011, Fitzgerald 2014, Swallow et al. 2020, Day et al. 2021)
This panel draws on the “Sociology of Low Expectations” (Gardner, Samuel, Williams 2015) and invites papers that reflect on how doubt and uncertainty are present in promissory technologies in the life science industry such as gene and cell therapy, stem cell, immunotherapy or personalized medicine in general. In addition to the performance of the “promissory rhetorics” (Borup et al., 2006; Brown, 2015), this panel seeks to analyze ethnographic moments in which hype is contested, and yet those practices are constitutive of technoscience.
Accepted papers:
Session 1Sara Goering (University of Washington) Eran Klein (Oregon Health and Science University) Andrew Brown (University of Washington)
Short abstract:
This paper explores two cases where participants in first-in-human trials of neural devices ("brain pioneers") had high or low expectations about the neurotechnology implanted in their brain. We explore how these varying expectations are managed by researchers and brain pioneers.
Long abstract:
Research participants in long-term, first-in-human trials of implantable neural devices (“brain pioneers”) are critical to the success of the emerging field of neurotechnology (e.g., Neuralink, brain-computer interfaces (BCIs), deep brain stimulation (DBS) for treatment-resistant depression, etc.). Brain pioneers’ motivations to enroll, participate, and seamlessly exit studies often rely on the management of high and low expectations. Our paper considers two distinct examples, one involving DBS (a neural device that remains active 24/7), the other involving BCIs (a neural device that is usually activated only during laboratory research sessions). First, we explore a case where a DBS pioneer with treatment-resistant depression did not expect the DBS to work at all, and continued to believe it was not working for years, even after no longer meeting the criteria for depression. Second, we consider various ways in which the daily expectations of BCI pioneers are managed at the lab – e.g., how do they cope with not being able to complete a computer task with their neural device? From 2023 to 2024, we conducted eleven open-ended interviews: six with brain pioneers (four iBCI users and two DBS users) and five with their care partners (spouses, caregivers, or parents). Drawing on qualitative data obtained from these interviews, this paper explores fluctuations in the expectations of brain pioneers in the context of participating in neural device trials.
Thomas Verra (Rathenau Institute) Sophie van Baalen (Rathenau Instituut) Eline Bunnik (Erasmus MC) Phil Macnaghten (Wageningen University) Michelle Habets (The Rathenau Instituut)
Short abstract:
This study explores how stakeholders envision the future of epigenetic editing, using semi-structured interviews. Our analysis show that the majority of respondents acknowledge many uncertainties and complexities of epigenetic editing, arguing for cautiousness in the way the field moves forward.
Long abstract:
Within the emerging field of epigenetic editing, many scientists (from academia and industry) seem to share the view that new epigenetic editing technologies (such as CRISPR/dCas9) open up a window of opportunity to change the expression of genes by editing the epigenome, without modifying the genomic sequence. In the future this may lead to new ways of curing diseases or new ways to improve crop traits. The promise of epigenetic editing is that it is more specific, more transient, reversible, and controllable than conventional gene editing technologies. Moreover, because no permanent insertions or deletions are made in the DNA sequence, it is perceived as “milder”, safer and more acceptable to the public.
We examined how involved stakeholders (scientists, industry) imagine the future of epigenetic editing by conducting semi-structured interviews. Contrasting the views on epigenetic editing as milder and safer than genetic editing, we find that many respondents acknowledge many uncertainties and complexities of epigenetic editing, because of the complexity of genome regulation, and the limitations of the currently available knowledge as the field is still in its infancy.
The majority of respondents foresee a role for epigenetic editing in medicine but simultaneously warn that we need to move forwards cautiously. We will give an overview of different sociotechnical imaginaries for epigenetic editing and will analyze their underlying assumptions and normative and descriptive dimensions.
Megan MacGregor (University of Chicago)
Short abstract:
Using microbiome science as a case study, this paper examines how scientists navigate the concurrent professional pulls of mobilizing and contesting hype. It argues that positioning with respect to hype is a key mode of enacting professional legitimacy and self-fashioning as a “good scientist.”
Long abstract:
Surrounding the emerging field of microbiome science, hope and hype abound regarding the medical potential of microbial interventions to revolutionize personal medicine and treat a stunning range of illnesses, from gut and metabolic illnesses to autoimmune, mood, and developmental disorders. However, many U.S. microbiome scientists show concern with balancing public interest and funding, on one hand, with realistic expectations on the other, wanting to avoid the mistake of overpromising they associate with genomic medicine and other translational efforts. For science studies scholars, this raises an important and undertheorized question in the study of technoscientific hype: what role does the management of hype play in the professional norms and virtues of biomedical science? While science studies scholars have begun to understand the economic, affective, and technological facets of biomedical promise, few approaches have considered how scientists enact and perform their own relationships to hype. Using U.S. microbiome science as a case study, this paper examines the role of hype in scientific professional praxis. It draws on ethnographic fieldwork, interviews with U.S. microbiome researchers, and science journalism analysis to draw new connections between hype in technoscience and enactments of scientific expertise (Carr 2010). It argues that navigating the concurrent professional pulls of mobilizing and contesting hype enacts expert legitimacy and ethical self-fashioning as a “good scientist” (Lloyd and Raikhel 2018; Daston and Galison 2007). By considering hype through the lens of scientific professional praxis, this paper offers a new perspective from which to consider hype and its contestation in technoscience.
Jennifer Croissant (University of Arizona)
Short abstract:
This paper will describe recent neuro- and ocular- implant devices which have been abandoned by their companies of development, despite patient satisfaction with the devices. These cases will explore the regulatory and financial contexts of devices and the shaping of their non-development.
Long abstract:
In recent business and medical news briefs, there have been accounts of patients with implanted medical devices that have been abandoned. Ocular implants and neurotechnologies are two of the known cases of company cancellations. The devices have not been abandoned by dissatisfied patients, but removed or rendered obsolete by company failures or changes in direction. This paper will analyze these device abandonments through the lens of a Latourian analysis about the love of the technologies, but attuned to the economic power differentials between patients and their regard for their devices, and the calculus of the market and regulatory environments around these technologies. As noted by Bjiker and later developments in Actor-Network Theory, the ‘working’ of neuro-implants and related technologies has to do with more than technical effectiveness and encompasses financial considerations which may be disadvantageous to patient-users.