Biosociality, biocitizenship and the new regime of hope and despair: interpreting “Portraits of Hope” and the “Mehmet Case”

Brekke, Ole Andreas; Sirnes, Thorvald

doi:10.1080/14636778.2011.592012

Cited by 28 publications

(18 citation statements)

References 26 publications

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“…Individuals living with illness for which there is little possibility of cure often put their faith in technological or scientific breakthroughs (Brekke and Sirnes, 2011). …”

Section: Hope As An Experience Of Faithmentioning

confidence: 99%

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Ways of Hoping: Navigating the Paradox of Hope and Despair in Chronic Pain

Eaves

Nichter

Ritenbaugh

2015

Cult Med Psychiatry

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In this paper, we explore hope in the context of living with chronic pain. Individuals with chronic pain from temporomandibular disorder(s) (TMD) were interviewed four to five times over the course of their 18-month participation in a clinical trial investigating the effectiveness of Traditional Chinese Medicine. We sought to understand shifts in participants’ descriptions of expectations and hopefulness, particularly with regard to the work involved in counterbalancing positive thinking with buffers against disappointment. We found hope to be a dynamic and multifaceted mindset as distinct from being a single entity to be measured. Drawing upon Polanyi’s concept of tacit knowing, we explore how different ways of hoping emerge and index one another in participant narratives. We offer a working typology of hope and raise as an issue the manner in which the paradox of hope—hoping enough to carry on while keeping hopes in check to avoid the ever-present possibility of despair—complicates simplistic notions of the relationship between positive thinking and the placebo response.

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“…Individuals living with illness for which there is little possibility of cure often put their faith in technological or scientific breakthroughs (Brekke and Sirnes, 2011). …”

Section: Hope As An Experience Of Faithmentioning

confidence: 99%

“…Ignorance, resignation, and hopelessness in the face of the future are deprecated. In cases where there is little hope for resolution in a realistic sense, individuals are encouraged to pin their hopes on the promise of new technology and medical advances (Brekke and Sirnes, 2011). …”

mentioning

confidence: 99%

Ways of Hoping: Navigating the Paradox of Hope and Despair in Chronic Pain

Eaves

Nichter

Ritenbaugh

2015

Cult Med Psychiatry

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“…Collins 2010), Abby Lippman coined the term “genticization” to describe the ongoing process where “differences between individuals are reduced to their DNA codes”; most disorders and behaviors are defined, at least in part, by genetic origin; and scientists, practitioners, and others advocate for the adoption of interventions that use genetic technologies to manage health problems (Lippman 1992, 1470). More recently, scholars have pushed back against extreme forms of geneticization, arguing that they mislead or oversimplify the ways genetic knowledge shifts how we think about identity and causation (Novas and Rose 2000; Rose 2007; Brekke and Sirnes 2011; Easter 2014). Nikolas Rose argues that new biological research pushes us towards becoming “biological citizens” with rights, duties, expectations, relationships, and a reconceptualization of ourselves as “somatic,” or biological, individuals (Rose 2007, 6); genetic risk is knowledge that we expect individuals to act upon in maintaining or improving their health.…”

Section: Introductionmentioning

confidence: 99%

“…It is clear that most scholars do not endorse a strongly deterministic form of geneticization, but most do argue, like Rose (2007, 253) does, that “in all manner of small ways, … things will not be quite the same as they were,” since the forms of knowledge that shape our understanding of ourselves are increasingly biological. This process is less a sledgehammer, and a needle and thread: the genetic and the “high tech” inserting itself and redirecting, but being woven into, existing personal and social storylines (Easter 2014; Brekke and Sirnes 2011; Sharon 2014; Rose 2007). If these scholars are right, genetics should be woven into personal narratives in noticeable ways across a variety of contexts, including addiction.…”

Section: Introductionmentioning

confidence: 99%

“I don’t have to know why it snows, I just have to shovel it!”: Addiction recovery, genetic frameworks, and biological citizenship

et al. 2017

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The gene has infiltrated the way citizens perceive themselves and their health. However, there is scant research that explores the ways genetic conceptions infiltrate individuals’ understanding of their own health as it relates to a behavioral trait, like addiction. Do people seeking treatment for addiction ground their self-perception in biology in a way that shapes their experiences? We interviewed 63 participants in addiction treatment programs, asking how they make meaning of a genetic understanding of addiction in the context of their recovery, and in dealing with the stigma of addiction. About two-thirds of people in our sample did not find a genetic conception of addiction personally useful to them in treatment, instead believing that the cause was irrelevant to their daily struggle to remain abstinent. One-third of respondents believed that an individualized confirmation of a genetic predisposition to addiction would facilitate their dealing with feelings of shame and accept treatment. The vast majority of our sample believed that a genetic understanding of addiction would reduce the stigma associated with addiction, which demonstrates the perceived power of genetic explanations in U.S. society. Our results indicate that respondents (unevenly) ground their self-perception of themselves as an addicted individual in biology.

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“…Research on promissory technologies (e.g., stem cell, cord blood banking, and gene therapy) has often focused on the role played by public discourse, media representations, and large-scale capital investments in fueling “regimes of hope” (Martin, Brown & Turner, 2008; see also Brekke & Sirnes, 2011; Petersen & Seear, 2011). In the context of expansionary hopes and hype, biological specimens (e.g., stem cells, blood, DNA), as they are technologically reformulated as information, come to have “biovalue,” a concept Waldby (2000, p. 33) defines as whatever is “generated wherever the generative and transformative productivity of living entities can be instrumentalized along lines which make them useful for human projects” (see also Waldby & Mitchell, 2006).…”

Section: Introductionmentioning

confidence: 99%

Flexible positions, managed hopes: The promissory bioeconomy of a whole genome sequencing cancer study

Haase¹,

Michie²,

Skinner³

2015

Social Science & Medicine

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Genomic research has rapidly expanded its scope and ambition over the past decade, promoted by both public and private sectors as having the potential to revolutionize clinical medicine. This promissory bioeconomy of genomic research and technology is generated by, and in turn generates, the hopes and expectations shared by investors, researchers and clinicians, patients, and the general public alike. Examinations of such bioeconomies have often focused on the public discourse, media representations, and capital investments that fuel these “regimes of hope,” but also crucial are the more intimate contexts of small-scale medical research, and the private hopes, dreams, and disappointments of those involved. Here we examine one local site of production in a university-based clinical research project that sought to identify novel cancer predisposition genes through whole genome sequencing in individuals at high risk for cancer. In-depth interviews with 24 adults who donated samples to the study revealed an ability to shift flexibly between positioning themselves as research participants on the one hand, and as patients or as family members of patients, on the other. Similarly, interviews with members of the research team highlighted the dual nature of their positions as researchers and as clinicians. For both parties, this dual positioning shaped their investment in the project and valuing of its possible outcomes. In their narratives, all parties shifted between these different relational positions as they managed hopes and expectations for the research project. We suggest that this flexibility facilitated study implementation and participation in the face of potential and probable disappointment on one or more fronts, and acted as a key element in the resilience of this local promissory bioeconomy. We conclude that these multiple dimensions of relationality and positionality are inherent and essential in the creation of any complex economy, “bio” or otherwise.

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Biosociality, biocitizenship and the new regime of hope and despair: interpreting “Portraits of Hope” and the “Mehmet Case”

Cited by 28 publications

References 26 publications

Ways of Hoping: Navigating the Paradox of Hope and Despair in Chronic Pain

Ways of Hoping: Navigating the Paradox of Hope and Despair in Chronic Pain

“I don’t have to know why it snows, I just have to shovel it!”: Addiction recovery, genetic frameworks, and biological citizenship

Flexible positions, managed hopes: The promissory bioeconomy of a whole genome sequencing cancer study

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