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

Abstract

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.

Accounting, decisions and promises

“…To realise the complex relations between research, economy and politics in pharmaceutical industries it is not strange that a decision to produce a new medical treatment is only the first step into various complex relations that have to be developed over time and across many agencies and interests. This is a bio-economy of hope that justifies biological experiments and impacts not only illnesses but also people, society, firms and capital markets (Brown, 2005;Haase, Michie and Skinner, 2015;Petersen and Krisjansen, 2015; see also Gibbons, Limoges, Nowotny, Schwartzman, Scott and Trow, 1994;Nowotny, Gibbons and Scott, 2000). This promissory economy is fragile because the investments and transformations needed to negotiate the promise have to be established and therefore the promise develops action in the laboratory, in production sites, in venture capital markets and in nation states, all of whom have to be enrolled.…”

Enrolling Genomics Research Participants through a Clinical Setting: the Impact of Existing Clinical Relationships on Informed Consent and Expectations for Return of Research Results

“…Moving beyond trust in the perceived recommendation of a provider, patients who are asked to participate in research being conducted by their own healthcare provider may even feel a sense of obligation to participate. A sense of wanting to help those who had helped you through providing clinical care has been reported previously as a motivation for participation in genetics research (Hallowell et al 2010;Haase et al 2015). This potential may be particularly strong in rare disease populations for which limited alternative options for specialty care for their condition exist, even despite provider efforts to avoid influence on research decisions.…”

“…In their report of adults enrolled in a study of hereditary cancer susceptibility and the clinician-researchers who had dual roles with these patient-participants, Haase et al (2015) noted that both research participants and study team members were impacted by an existing clinical relationship with one another. Their study has similar findings regarding the impact of trust on enrollment, which our study expands beyond hereditary cancer to encompass additional suspected Mendelian phenotypes and both affected adults and parents of affected children.…”

“…Their study has similar findings regarding the impact of trust on enrollment, which our study expands beyond hereditary cancer to encompass additional suspected Mendelian phenotypes and both affected adults and parents of affected children. Haase et al (2015) proposed that both parties enter into a promissory bioeconomy that promotes shared goals and advancement. The authors also suggested that while a clear distinction between clinical care and research may not be possible in this situation, a flexibility between positions can temper unrealistic expectations and impart a shared understanding of what a meaningful research result may be.…”

With great (participant) rights comes great (researcher) responsibility

“…A rhetorical use of rights language refocuses attention from privacy risks and toward promoting more information altruism among patients and toward the goal of scientific progress to which participants could "rightfully" contribute. If patients are willing to become information altruists to help researchers achieve benefits to society (and to future patients, family members, or even themselves), 5 then the corresponding obligation on the part of researchers, which invocation of rights language should motivate, is to make every effort to ensure that research using personal information and samples will in fact yield those benefits. 6 Some might argue that we are experiencing a significant shift in research roles and relationships, undermining traditional expectations and behaviors, and new language is needed.…”