Hostile environments? Down’s syndrome and genetic screening in contemporary culture (open access)
Lucy Burke
This essay explores the complex entanglement of new reproductive technologies, genetics, health economics, rights-based discourses and ethical considerations of the value of human life with particular reference to representations of Down’s syndrome and the identification of trisomy 21. Prompted by the debates that have occurred in the wake of the adoption of non-invasive prenatal testing (NIPT), the essay considers the representation of Down’s syndrome and prenatal testing in bioethical discourse, feminist writings on reproductive autonomy and disability studies and in a work of popular fiction, Yrsa Sigurdardóttir’s Someone To Look Over Me (2013), a novel set in Iceland during the post-2008 financial crisis. It argues that the conjunction of neo-utilitarian and neoliberal and biomedical models produce a hostile environment in which the concrete particularities of disabled people’s lives and experiences are placed under erasure for a ‘genetic fiction’ that imagines the life of the ‘not yet born’ infant with Down’s syndrome as depleted, diminished and burdensome. With close reference to the depiction of Down’s syndrome and learning disability in the novel, my reading explores the ways in which the generic conventions of crime fiction intersect with ideas about economics, politics and learning disability, to mediate an exploration of human value and social justice that troubles dominant deficit-led constructions of disability.
Genetic enhancement, TED talks and the sense of wonder (open access)
Loredana Filip
TED talks are an emergent and hybrid genre (Ludewig) and have become a highly successful disseminator and populariser of scientific knowledge (Sugimoto et al). The popular appeal of TED may also stem from the promise to deliver life-changing insights in a short amount of time. Besides, TED talks may rely on a science fictional ‘sense of wonder’ (Sawyer) in their representations of new technologies. CRISPR-Cas9 is a genome-editing technology that has captured the imagination of scientists. Science’s 2015 Breakthrough of the Year, CRISPR became the focus of ethical debates because of its potential to engineer the human. Rather than its therapeutic use, it is the potential for enhancement that gains traction in media. For these reasons, scientists have called for “a global pause in any clinical applications of the CRISPR technology in human embryos” (Doudna). TED talks actively shape the discourse on genetics at a global level. Embedded in the American culture of self-help and self-improvement, TED talks produce genetic stories that may favour an optimistic representation of genetic engineering. This paper aims to pursue the following questions: how do TED’s formal elements affect the representation of the genome? And how do they influence contemporary constructions of identity? By focusing on two playlists—‘How does DNA work?’ and ‘Get into your genes’ – this paper investigates the emergence of at least three formal features that inform these stories. These three recurring elements—conceptual breakthroughs, a sense of awe, and prophetic statements—also animate a sense of wonder and rely on the notion of ‘vision’ to define the human. In the end, TED talks aim to anticipate or even shape the future. This article argues that we need to pay close attention to how they set out to shape our ‘genetic future’.
Suspicious minds: cinematic depiction of distrust during epidemic disease outbreaks(open access)
Qijun Han, Daniel R Curtis
One key factor that appears to be crucial in the rejection of quarantines, isolation and other social controls during epidemic outbreaks is trust—or rather distrust. Much like news reporting and social media, popular culture such as fictional novels, television shows and films can influence people’s trust, especially given that the information provided about an epidemic disease is sometimes seen as grounded in ‘scientific fact’ by societies. As well as providing information on the ‘correct science’ behind disease transmission, spread and illness in films and literature, popular culture can also inform societies about how to feel and how to react during epidemics—that is to say create some expectations about the kinds of societal responses that could potentially occur. In this article we closely analyse three films that centre around epidemic diseases—Contagion (Steven Soderbergh, 2011), Blindness (Fernando Meirelles, 2008) and The Painted Veil (John Curran, 2006)—in order to highlight three categories of distrust that have recently been identified and conceptualised in broader discussions regarding trust and health: institutional, social and interpersonal. These films raise two key issues about trust and social responses during epidemics. First, while certain aspects of trust are badly diminished during epidemic disease outbreaks, epidemics can also interact with pre-existing structural inequalities within society—based on race, gender or wealth—to create mixed outcomes of discord, prejudice and fear that coexist with new forms of cohesion. Second, the breakdown in trust seen at certain levels during epidemics, such as at the institutional level between communities and authorities or elites, might be mediated or negotiated, perhaps even compensated for, by heightened solidity of trust at the social level, within or between communities.
Paula Boddington, Katie Featherstone, Andy Northcott
This study contributes to our understanding of the ‘medical gaze’ and its impact on the ways in which people living with dementia experience care during a hospital admission. Visual perception has a powerful effect on our emotional and moral reactions to others. One aspect of how we perceive and respond to others is through clothing, which relates strongly to class and social position. Our focus is on exploring the ways in which patient clothing may affect the perceptions and response of others, and self-perception and resulting behaviour. We draw on ethnographic research within acute hospital wards in five hospitals across England and Wales, examining the everyday organisation and delivery of care to people living with dementia. People living with dementia are a significant population who have poor experiences and outcomes of care within the acute setting. Our data suggest that the twin aspects of clothing and appearance—of self-perception, and of perception by others—may be especially important in the fast-paced context of an acute ward environment, where patients living with dementia may be struggling with the impacts of an additional acute medical condition within in a highly timetabled, regimented, and unfamiliar environment of the ward, and where staff perceptions of them may feed into clinical assessments of their condition and subsequent treatment and discharge pathways.
The consumer representation of DNA ancestry testing on YouTube (open access)
Alessandro Marcon, Christen Rachul, Timothy Caulfield
The growth of consumer DNA ancestry testing has resulted in questions and critiques being raised in social and research contexts. This study examined individuals discussing their ancestry DNA testing results on YouTube by searching for the two most popular testing companies (23andMe; Ancestry) and the phrase “DNA results.” The finalized dataset consisted of 117 videos, on which directed content analysis was performed. In the videos, individuals used results to clarify, confirm, question, and re-evaluate their previously held conceptions of racial/ethnic identities. Reactions were more positive than negative (88.1% vs. 8.1%), and results more commonly reaffirmed (77.8%) than re-conceptualized (40.0%) one’s racial/ethnic identity. Ancestry testing and personal social media accounts were commonly promoted, demonstrating biotechnological hype where promotion abounds and critiques are scarce. Questions persist around the impact of ancestry DNA testing in reifying a scientifically inaccurate conception of race and what impact YouTube videos might have on audiences.
The somatic mode: doing good in targeted cancer therapy
Ivana Bogicevic, Kristoffer Staal Rohrberg, Estrid Høgdall and Mette N. Svendsen
This article explores the ethical challenges following the use of genetic information in experimental cancer treatment. In Danish healthcare, current ethical debates on the wider use of genetic information are highly focused on the heredity of genetic information. This focus accords with the international bioethical literature and the established practices of assessing inherited risks for cancer. Drawing on Pols’ (2003. “Enforcing Rights or Improving Care? The Interference of two Modes of Doing Good in Mental Health Care.” Sociology of Health & Illness 25 (4): 320–347. doi:10.1111/1467-9566.00349) concept of modes of doing good, we show that this has led to a certain understanding of the ethical challenges regarding genetic information – an understanding we term the germline mode. We argue that the germline mode overlooks crucial dilemmas facing healthcare professionals who use genetic information to target treatment directly at patients’ somatic mutations, i.e. alterations in the DNA occurring only in the tumor. In this article, we develop the concept of the somatic mode and explore the ethical challenges that emerge when genetic information takes a somatic turn.
The double helix at school: Behavioral genetics, disability, and precision education
Maya Sabatello, Beverly J.Insel, Thomas Corbeil, Bruce G.Link, Paul S.Appelbaum
The prospect of using behavioral genetic data in schools is gaining momentum in the U.S., with some scholars advocating for the tailoring of educational interventions to students’ genetic makeup (“precision education”). Public perspectives on testing for and using behavioral genetic data in schools can affect policies but are unknown. We explored public views in the U.S. (n = 419) on key issues in precision education. The introduction of a child’s behavioral genetic information regarding Attention-Deficit/Hyperactivity-Disorder was associated with beliefs that such data should be considered in educational planning for the child and increased medicalization, but also a belief in treatment efficacy. Most participants expressed interest in learning about children’s behavioral genetic predispositions but would disapprove of testing without parental consent. Differences by participants’ race, ethnicity and educational attainment were observed. Our findings indicate the public’s complex understanding of genetic information and the challenges for wide implementation of precision education in the U.S.
Sandra Florian, Mathieu Ichou, Lidia Panico
Immigrants tend to exhibit better health than natives despite immigrants’ more disadvantaged socioeconomic status. This paradox has often been attributed to immigrants’ pre-migration selectivity. However, most empirical studies investigating the role of selectivity have focused on adult health; less attention has been paid to children’s birth outcomes outside the U.S. context. Using data from the Etude Longitudinale Française depuis l’Enfance (ELFE), a nationally representative sample of over 18000 births in France in 2011, we investigate the role of immigrant parents’ educational selectivity in shaping four birth outcomes: birthweight, low birthweight, prematurity, and being born small for gestational age. Results from linear and logistic regressions confirm a health advantage for children of immigrants compared to natives despite lower parental socioeconomic status, mainly among children of Middle Eastern and North African parents. Immigrant parents’ positive pre-migration educational selectivity explains most of this health advantage, predominantly among children with two immigrant parents. Further, mediation analyses indicate that the effect of educational selectivity is partially mediated by parental health behaviors, particularly smoking during pregnancy. Furthermore, analyses suggest that selectivity improves birth outcomes only for children of recent arrivals, with less than five years of residence in France. The beneficial effect of selectivity declines with length of residence, suggesting that a process of “unhealthy assimilation,” coupled with the cumulative exposure to health risks and disadvantaged living conditions, may lead to the erosion of the protective effect of immigrant selectivity.
Francesca Borgonovi, ElodieAndrieu, S.V. Subramanian
We use county level data from the United States to document the role of social capital the evolution of COVID-19 between January 2020 and January 2021. We find that social capital differentials in COVID-19 deaths and hospitalizations depend on the dimension of social capital and the timeframe considered. Communities with higher levels of relational and cognitive social capital were especially successful in lowering COVID-19 deaths and hospitalizations than communities with lower social capital between late March and early April. A difference of one standard deviation in relational social capital corresponded to a reduction of 30% in the number of COVID-19 deaths recorded. After April 2020, differentials in COVID-19 deaths related to relational social capital persisted although they became progressively less pronounced. By contrast, the period of March–April 2020, our estimates suggest that there was no statistically significant difference in the number of deaths recorded in areas with different levels of cognitive social capital. In fact, from late June-early July onwards the number of new deaths recorded as being due to COVID-19 was higher in communities with higher levels of cognitive social capital. The overall number of deaths recorded between January 2020 and January 2021 was lower in communities with higher levels of relational social capital. Our findings suggest that the association between social capital and public health outcomes can vary greatly over time and across indicators of social capital.
Allocation of health care under pay for performance: Winners and losers (open access)
Anne Sophie Oxholm, Sibilla Di Guida, Dorte Gyrd-Hansen
Many physicians receive a payment for their performance (P4P). This performance is often linked to a health target that triggers a bonus when met. For some patients the target is easily met, while others require a significant amount of care to reach the target (if ever). This study contributes to the literature by providing evidence of how P4P affects allocation of care across patients with low and high responsiveness to treatment compared to a fixed payment, such as capitation and salary, under different degrees of resource constraint. Our evidence is based on a controlled laboratory experiment involving 143 medical students in Denmark in 2019. We find that patients who have the potential to reach the health target, gain care under P4P, whereas patients with no potential to reach it, may receive less care. Redistribution of care between patients under P4P arises when physicians are resource constrained. As many physicians are currently operating under tight resource constraints, policymakers should be careful to avoid unintended inequalities in patients’ access to health care when introducing P4P. Risk-adjusting the performance target may potentially solve this issue.
Heterogeneity in preventive behaviors during COVID-19: Health risk, economic insecurity, and slanted information (open access)
Su Hyun Shin, Hyunjung Ji, HanNa Lim
The present study examines whether people respond heterogeneously to statewide social distancing mandates as a function of factors that proxy for health risk, economic insecurity, and media consumption. Using longitudinal data of 7400 American adults between March 10 and June 23, 2020, the study examines social-distancing and mask-wearing behaviors. We use a staggered difference-in-difference model to explore whether state policies lead to preventive behaviors. We further examine heterogeneity in individual responses to state mandates by including interaction terms with health risk, economic insecurity, and media consumption. The study finds that state policies lead to increased adoption of these behaviors. Our findings also suggest that old age and living with the elderly are key predictors of preventive behavior adoption in the presence or even absence of state mandates. However, the economically insecure, such as the unemployed, those with low incomes and net worth, or without health insurance, are less likely to adopt preventive behaviors regardless of the mandates. The adoption of the behaviors is also polarized between CNN users and Fox News/Social Media users, with greater compliance by the former.
Diagnostic layering: Patient accounts of breast cancer classification in the molecular era (open access)
Emily Ross, Julia Swallow, Anne Kerr, Choon Key Chekar, Sarah Cunningham-Burley
Social scientific work has considered the promise of genomic medicine to transform healthcare by personalising treatment. However, little qualitative research attends to already well-established molecular techniques in routine care. In this article we consider women’s experiences of routine breast cancer diagnosis in the UK NHS. We attend to patient accounts of the techniques used to subtype breast cancer and guide individual treatment. We introduce the concept of ‘diagnostic layering’ to make sense of how the range of clinical techniques used to classify breast cancer shape patient experiences of diagnosis. The process of diagnostic layering, whereby various levels of diagnostic information are received by patients over time, can render diagnosis as incomplete and subject to change. In the example of early breast cancer, progressive layers of diagnostic information are closely tied to chemotherapy recommendations. In recent years a genomic test, gene expression profiling, has become introduced into routine care. Because gene expression profiling could indicate a treatment recommendation where standard tools had failed, the technique could represent a ‘final layer’ of diagnosis for some patients. However, the test could also invalidate previous understandings of the cancer, require additional interpretation and further prolong the diagnostic process. This research contributes to the sociology of diagnosis by outlining how practices of cancer subtyping shape patient experiences of breast cancer. We add to social scientific work attending to the complexities of molecular and genomic techniques by considering the blurring of diagnostic and therapeutic activities from a patient perspective.
Qingfang Zhang, Hui Zhang, Honggang Xu
Health-driven seasonal tourism has become a new way of providing for the aged, which demonstrates a profound relationship between place and health. Therapeutic landscapes strongly suggest a causal relationship between health tourism destination and individual health. However, the quantitative validation of such relationship remains neglected and possible mechanisms underlying the relationship lack a strong theoretical basis. Based on therapeutic landscape theory and the REPLACE framework, this study quantitatively examines health promotion mechanisms of health tourism destinations by using data collected in Sanya, China, in January 2019. The effect of personal traits of dispositional optimism on health perceptions is also considered. The results show that physical, social, and symbolic landscapes positively influence health perceptions through restorative experiences. Social landscapes, symbolic landscapes and dispositional optimism positively affect health perception, while physical landscapes do not directly have a significant impact on health perception. It is expected that this study will fill the knowledge gap and advance our knowledge of therapeutic landscapes by exploring how they can influence health.
Ashley C. Rondini, Rachel H. Kowalsky
This paper presents a critique of clinical practice guidelines (CPGs) that standardize the use of race as a proxy for biological difference in medical settings. Drawing on the illustrative example of a pediatric UTI testing guideline, we contend that when CPGs necessitate that Black patients meet a higher threshold of illness severity or duration than their non-Black counterparts to receive comparable medical testing or other medical care, they function as mesolevel sites of race-racism reification processes (see Sewell, 2016) that contribute to the reproduction of racial health disparities. We describe broader implications and make recommendations for the conceptualization and implementation of future research in the sociological study of race, health, and medicine.
Alexandra Rodney
Healthy living blogs are ideal sites to analyze how biopedagogy (the teaching of body regulation) operates through social media produced by everyday people. Drawing from a theoretical framework grounded in neoliberal governmentality, biopower, and individualization, this paper endeavors to understand how healthy living blogs function as pedagogical sites where body management is taught. To address this question, the food discourse on 459 healthy living blog posts, written by highly successful and foundational women bloggers from the United States, was analyzed. The analysis reveals that the blogs operate as biopedagogical sites, incorporating key elements of truth, subjectification, and power (Harwood in: Wright and Harwood (eds) Biopolitics and the ‘obesity epidemic’: governing bodies, Routledge, New York, 2009). Epistemic logics are also revealed as key building blocks of biopedagogy. The bloggers draw from a knowledge and belief system in the same way that medical professionals rely on scientific knowledge and evidence to support health claims. Healthy living blogs use bodily knowledge and evidence in support of their food choices. As a result, they teach body regulation through the logics of body knowledge and body mastery. The concept of the “blogspert” is offered to describe the way in which bloggers’ authority as health experts is produced through anecdotal evidence that they have successfully cultivated bodily knowledge towards losing or managing weight.
Patrick O’Byrne, Marlene Haines
Consensual non-monogamy is a specific subculture that includes swingers, persons in open relationships and those who are polyamorous. While most previous studies have sought to either detail the subcultural norms for these groups or assess their risks for sexually transmitted infections, we aimed to better understand the narratives of persons who engage in consensual non-monogamy. Our goal was to understand the structure and nature of their reported lifestyles, and to better understand these theoretically. To do this, we interviewed 14 persons (7 males, 7 females), and analysed their data thematically. We then discussed these findings using the works of Deleuze & Guattari and Gayle Rubin. Our analysis and discussion identified that consensual non-monogamy could be described as a series of Deleuzian becomings that were nevertheless stratified, and which aligned but differed from what Rubin called the charmed circle of sexuality.
Sociology of Health and Illness
Robert Pralat, Fiona Burns, Jane Anderson, Tristan J. Barber
It is now established that people living with HIV who have an undetectable viral load and adhere to antiretroviral treatment cannot transmit HIV to their sexual partners. Previous research has shown that ‘being undetectable’ changes how HIV-positive gay men experience their sex lives. But how does it affect gay men’s reproductive behaviours? And what influence does it have on views about parenthood at a time when gay fatherhood has become more socially accepted and publicly visible? Drawing on qualitative interviews with patients and clinicians at four HIV clinics in London, we identify differences in how interviewees talked about the possibility of having children for HIV-positive men. Both groups, unprompted, frequently referred to sperm washing as a method enabling safe conception. However, whereas clinicians talked about sperm washing as an historical technique, which is no longer necessary, patients spoke of it as a current tool. The men rarely mentioned being undetectable as relevant to parenthood and, when prompted, some said that they did not fully understand the mechanics of HIV transmission. Our findings offer new insights into how biomedical knowledge is incorporated into people’s understandings of living with HIV, raising important questions about how the meanings of being undetectable are communicated.
Regitze Anne Saurbrey Pals, Imelda Coyne, Timothy Skinner, Dan Grabowski
For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre-teens (9-12 years) with type 1 diabetes and their families has been suggested as key to understanding and reducing these challenges. The aim of this study was to explore: 1, how diabetes affects family life, 2, experiences of and needs for support and 3, how care responsibilities are negotiated among pre-teens with type 1 diabetes and their families. Data were obtained from four interactive workshops with pre-teens (n = 17), their parents (n = 26) and their siblings (n = 14). Dialogue tools, for example quotes and picture cards, were used to facilitate discussion and reflection concerning family life with type 1 diabetes. Data analysis resulted in three themes: 1, diabetes takes up ‘a lot of space’, 2, giving and receiving support and 3, balancing control and flexibility. While diabetes took up significant space in the families, family members protected each other from their respective frustrations. The findings point to the significance of considering all key family members and their interactions in diabetes interventions. This includes balancing control and flexibility, negotiating responsibilities and building trust.
Understanding adolescent health risk behaviour and socioeconomic position: A grounded theory study of UK young adults (open access)
Laura Tinner, Deborah Caldwell, Matthew Hickman, Rona Campbell
Health risk behaviours such as tobacco smoking, excessive alcohol consumption, drug use, unhealthy diet and unprotected sexual intercourse contribute to the global burden of non-communicable diseases and are often initiated in adolescence. An individualistic focus on ‘health risk behaviours’ has resulted in behaviour change strategies that are potentially ineffective and increase inequalities. We conducted a grounded theory study of 25 young adults to increase the limited qualitative evidence base surrounding young people, health risk behaviours and socioeconomic inequalities. We found that health risk behaviours were perceived as class markers, manifesting as class stigma, leading some participants from lower socioeconomic backgrounds to employ strategies to avoid such behaviours. Peers and family were core constructs for understanding the relationship between health risk behaviours and socioeconomic life trajectories. However, individualism and choice were consistently expressed as the overriding narrative for understanding health risk behaviour and socioeconomic position during the transition to adulthood. The use of ‘personal responsibility’ discourse by young adults, we argue, highlights the need for a public health focus on achieving structural changes as opposed to individualised approaches to avoid reinforcing neoliberal ideologies that serve to marginalise and maintain social inequalities.
Culturally sensitive conceptualization of resilience: A multidimensional model of Chinese resilience
Qiuyuan Xie, Daniel Fu Keung Wong
Cultural sensitivity is missing in the widely researched construct of resilience. The assumption that resilience takes the same form in all cultures fails to acknowledge that culture shapes the interpretation and instantiation of resilience. Examining how suffering and adversity are perceived and dealt with in Chinese contexts, can identify cultural concepts related to resilience. In this paper, we examine the ways in which Confucianism, Buddhism, and Taoism, the three main belief systems that have influenced Chinese people’s perception of the nature of life, can serve as sources of strength to individuals facing adversity. We summarise three culturally inflected elements of dealing with adversities and compare them with existing, widely researched notions of resilience. Taking a socio-ecological perspective to explore resilience, this paper proposes a multidimensional model that can improve understanding of culturally embedded resilience.
Adair Cardon, Tara Marshall
Raising a child with Autism Spectrum Disorder (ASD) can often be a difficult and stressful process for families and caregivers. Though research on ASDs in Africa is burgeoning, very little is known about autism in francophone West Africa. Furthermore, no known ASD studies have explored parental experiences in particular from a cross-cultural perspective. This research used Interpretative Phenomenological Analysis to analyze in-depth, semi-structured interviews with seven Senegalese and seven American families to investigate parental experiences within the Senegalese community with further illustration by cross-cultural comparison. Comparative analysis of data across the two countries was undertaken to identify cultural variables previously unreported, especially those that may affect Senegalese family experience. Analysis of interviews revealed thematic differences in social and community support. Although access to effective treatment services was low among Senegalese families compared to the American families, traditional Senegalese household structures and community relations were hypothesized to serve as protective factors against the high social isolation and resulting logistical struggles reported in the U.S. sample. Further targeted research within the Senegalese environment is recommended, particularly to explore social stigma and its possible effects on families with autism, causal beliefs and treatment practices, and parental mental health and wellbeing.