Narrating Disability, Narrating Religious Practice: Reconciliation and Fragile X Syndrome

This article examines the place of religion in the narratives of mothers of children with fragile X syndrome. In semistructured interviews, a majority of women combined narratives of religious practice with illness narratives, interpreting their children’s disabilities within a religious framework. Informed by Arthur Frank’s (1995) concept of “wounded storytellers,” the authors articulate a reconciliation narrative that mothers commonly used to describe their transition from viewing disability as a burden or challenge to seeing it as a blessing, or as a part of God’s purpose or plan for their lives. The authors discuss the significance of narrative for better understanding religious perspectives on disability and conclude with the implications of these findings for practitioners and future research

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

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

“If I Could in a Small Way Help”: Motivations for and Beliefs About Sample Donation for Genetic Research

Human genome research depends upon participants who donate genetic samples, but few studies have explored in depth the motivations of genetic research donors. This mixed methods study examines telephone interviews with 752 sample donors in a U.S. genetic epidemiology study investigating colorectal cancer. Quantitative and qualitative results indicate that most participants wanted to help society, and that many also wanted information about their own health, even though such information was not promised. Qualitative analysis reveals that donors believed their samples contributed to a scientific “common good”; imagined samples as information rather than tissues; and often blurred distinctions between research and diagnostic testing of samples. Differences between African American and White perspectives were distinct from educational and other possible explanatory factors

Am I a control?: Genotype-driven research recruitment and self-understandings of study participants

Genotype-driven research recruitment complicates traditional study roles and may leave those recruited worried about unwelcome surprises from their DNA. This study investigated the ways that individuals experience genotype-driven recruitment, and conceptualize their roles as research participants

The Meaning of Genetic Research Results: Reflections from Individuals with and without a Known Genetic Disorder

In the debate about whether to return individual genetic results to research participants, consideration of the nature of results has taken precedence over contextual factors associated with different study designs and populations. We conducted in-depth interviews with 24 individuals who participated in a genotype-driven study of cystic fibrosis: 9 of the individuals had cystic fibrosis, 15 had participated as healthy volunteers, and all had gene variants of interest to the researchers. These interviews revealed that the two groups had different ideas about the meaningfulness of genetic results. Our findings point to the importance of understanding research context, such as participants’ relationship with the researcher and whether they have the disease condition under study, when considering whether to return individual results

What Research Ethics Should Learn from Genomics and Society Research: Lessons from the ELSI Congress of 2011

Research on the ethical, legal, and social implications (ELSI) of human genomics has devoted significant attention to the research ethics issues that arise from genomic science as it moves through the translational process. Given the prominence of these issues in today's debates over the state of research ethics overall, these studies are well positioned to contribute important data, contextual considerations, and policy arguments to the wider research ethics community's deliberations, and ultimately to develop a research ethics that can help guide biomedicine's future. In this essay, we illustrate this thesis through an analytic summary of the research presented at the 2011 ELSI Congress, an international meeting of genomics and society researchers. We identify three pivotal factors currently shaping genomic research, its clinical translation, and its societal implications: (1) the increasingly blurred boundary between research and treatment; (2) uncertainty — that is, the indefinite, indeterminate, and incomplete nature of much genomic information and the challenges that arise from making meaning and use of it; and (3) the role of negotiations between multiple scientific and non-scientific stakeholders in setting the priorities for and direction of biomedical research, as it is increasingly conducted “in the public square.

Research Participants' Perspectives on Genotype-Driven Research Recruitment

Genotype-Driven Recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, “information is valuable,” and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally

Breaking barriers: using the behavior change wheel to develop a tailored intervention to overcome workplace inhibitors to breaking up sitting time

© The Author(s). 2019. Background: The workplace is a prominent domain for excessive sitting. The consequences of increased sitting time include adverse health outcomes such as cardiovascular disease and poor mental wellbeing. There is evidence that breaking up sitting could improve health, however, any such intervention in the workplace would need to be informed by a theoretical evidence-based framework. The aim of this study was to use the Behaviour Change Wheel (BCW) to develop a tailored intervention to break up and reduce workplace sitting in desk-based workers. Methods: The BCW guide was followed for this qualitative, pre-intervention development study. Semi-structured interviews were conducted with 25 office workers (26–59years, mean age 40.9 [SD=10.8] years; 68% female) who were purposively recruited from local council offices and a university in the East of England region. The interview questions were developed using the Theoretical Domains Framework (TDF). Transcripts were deductively analysed using the COM-B (Capability, Opportunity, Motivation – Behaviour) model of behaviour. The Behaviour Change Technique Taxonomy Version 1 (BCTv1) was thereafter used to identify possible strategies that could be used to facilitate change in sitting behaviour of office workers in a future intervention. Results: Qualitative analysis using COM-B identified that participants felt that they had the physical Capability to break up their sitting time, however, some lacked the psychological Capability in relation to the knowledge of both guidelines for sitting time and the consequences of excess sitting. Social and physical Opportunity was identified as important, such as a supportive organisational culture (social) and the need for environmental resources (physical). Motivation was highlighted as a core target for intervention, both reflective Motivation, such as beliefs about capability and intention and automatic in terms of overcoming habit through reinforcement. Seven intervention functions and three policy categories from the BCW were identified as relevant. Finally, 39 behaviour change techniques (BCTs) were identified as potential active components for an intervention to break up sitting time in the workplace. Conclusions: The TDF, COM-B model and BCW can be successfully applied through a systematic process to understand the drivers of behaviour of office workers to develop a co-created intervention that can be used to break up and decrease sitting in the workplace. Intervention designers should consider the identified BCW factors and BCTs when developing interventions to reduce and break up workplace sitting

This broken vessel: Living religion in an independent Pentecostal church

In collective worship and in their everyday lives, religious believers continually fuse together the ideas and practices they encounter in their community and society, in their places of worship, and in their personal experiences of the divine. This dissertation, based on six years of engaged, intensive ethnography with a community of Pentecostal believers in the southern United States, flows from the proposition that people’s individual religious identities are not simply products of their faith community. Rather, religious people constantly negotiate individual and communal religious identities, and both are continually changing as they shape one another in dynamic relationship. In this work, three spaces of religious practice serve as lenses through which to view religious identity production. The first, music and musical worship, offers a perspective on the crucial role of music in the church and its often transformative role in individual and collective identity formation. The second, a creative effort at evangelistic outreach through drama ministry, presents an opportunity to look at the choices a body of believers makes in order to present itself and its vision of Christian life to the surrounding community, and at the ways that individual and group identities change, conflict, and grow through collective creativity. The third space of religious practice, entrances and exits from the church community, invites a closer examination of the ways that relationships between individual and communal religious identities are built and dismantled, and the ways that identities are formed as narrative constructions. All of these spaces of practice and identity production take shape between the individual, the social, and the divine, as believers continually take into account their relationships not only with other believers and non-believers, but also with God and lesser supernatural agents. Taking seriously these believers’ accounts and insights reveals understandings of the everyday process of building religious identities that have much in common with complex social theories of identity and everyday life, but are in some ways broader and more holistic

Benefits of Understanding Systemic Racism in Forming Clinician-Patient Relationships to Reduce Black Infant Mortality

Background: The United States lags far behind other developed nations in our overall infant mortality rate. Public health researcher Arline Geronimus has described a "weathering" effect of chronic racial stress among Black women that contributes to high rates of preterm birth, the leading cause of infant death. Trusting relationships between clinicians and patients may play a role in reducing infant mortality for Black mothers. Based on a social-ecological model of health care communication around infant mortality, we focus here on doctor-patient communication and correlations between clinicians' understandings of systemic racism and their communication with Black pregnant patients.Methods: This paper reports the findings from interviews with 5 maternal health clinicians (prior to recruitment being temporarily paused due to COVID-19) practicing at Cuyahoga County hospitals that serve large populations of Black women. Qualitative coding methods based in grounded theory were used to draw out themes from interview transcripts.Results: Doctor-patient communication was an emergent theme in these interviews. Results suggest an association between clinicians' understanding of the impact of systemic racism and their ability to communicate successfully and form positive bonds with pregnant mothers who are at higher risk of infant mortality.Conclusion: Acknowledging systemic racism as the cause of poor social determinants of health, which in turn contribute to higher rates of infant mortality, may provide clinicians a pathway to more positive communication and higher levels of trust with their patients, which in turn may play a role in reducing infant mortality in the Black community. Further research should investigate these associations