In the Journals

In the Journals December 2015 – Part II

Find the first half of December’s post here.

New Genetics and Society

Beyond and within public engagement: a broadened approach to engagement in biobanking

Jose A. Cañada, Aaro Tupasela, Karoliina Snell

Social studies on biobanking have traditionally focused on public engagement, that is, engagement with donors, patients and the general public as an important factor of sustainability. In this article, we claim that, in order to fully understand the way biobanks work, it is necessary to pay attention to a number of other actors, which have an equal, if not greater, impact on their practices and strategies. This means taking a broadened approach to biobank engagement. By using data collected from interviews with different biobank experts based in five different countries (UK, Canada, Finland, Spain and Iceland), we identify seven communities, including the public, that emerge as relevant. Such relationships condition the way biobanks develop, act and plan. The discussion illustrates how the relationships with those seven communities are articulated. We conclude that there is a need for a broadened approach to biobank engagement in order to understand biobank sustainability.

Adoptable packages and the cost of their adoption: the craftwork of making the right cells for regenerative medicine in Japan

Koichi Mikami

The goal of regenerative medicine is to utilize biological properties of cells for therapeutic purposes. Although substantial international investment has been made in this biomedical technology, the issue of which type of cells best serves for these purposes still remains unsettled. Adopting a conceptual framework from Clarke and Fujimura that the rightness of “tools” needs to be socially constructed, this paper examines the interactions of various actors in Japan and demonstrates two kinds of craftwork as examples of attempts to construct the rightness of the cells for the technology. In such attempts, the actors not only produced adoptable packages but also assumed responsibility for their dissemination. However, because the packages are tied to their original practices as well as to their working environment, others would have to bear considerable cost of articulation to adopt them for their job and hence the rightness of the cells has not been firmly upheld.

Parent’s expectations and experiences of resemblance through donor conception

Astrid Indekeu

In the field of donor conception, matching is a practice that involves choosing gametes or embryos in such a way as to minimize physical differences between the donor and the recipients. This practice serves to create resemblance between child and social parent/s, to meet the societal norm of biological relationship and legitimize the family form.

This study focused on parents’ experiences and expectations of the clinical practice of matching and (non)resemblance with their donor-offspring. Results are based on accounts of 18 heterosexual donor-conceiving parents (11 couples) with a donor-offspring between 8 and 32 years old.

Findings suggest that resemblance is more than just a strategy to achieve social legitimization of the donor-conceived family. Resemblance also plays a role in the creation of family bonds and kinship. This suggests that the social reasoning behind matching should at least be complemented by a psychological understanding of relatedness and connectedness.

Closure of a human tissue biobank: individual, institutional, and field expectations during cycles of promise and disappointment

Neil Stephens, Rebecca Dimond

Biobanks are increasingly being established to act as mediators between patient-donors and researchers. In practice, some of these will close. This paper details the experiences of one such bank. We report interviews with the bank’s staff and oversight group during the period when the bank ceased biobanking activity, reconfigured as a disseminator of best practice, before then closing altogether. The paper makes three distinct contributions: (i) to provide a detailed account of the establishment, operational challenges, and eventual closure of the bank, which makes clear the rapid turnover in a cycle of promise and disappointment; (ii) to explore this in terms of a novel analytical focus upon field, institutional, and individual expectations; and (iii) to use this typology to demonstrate how, even after the bank’s closure, aspects of its work were reconfigured and reused in new contexts. This provides a unique empirical analysis of the under-reported issue of biobank closure.

 

Philosophy, Ethics, and Humanities in Medicine

Doctor can I buy a new kidney? I’ve heard it isn’t forbidden: what is the role of the nephrologist when dealing with a patient who wants to buy a kidney?

Giorgina Barbara Piccoli, Laura Sacchetti, Laura Verzè, Franco Cavallo

Organ trafficking is officially banned in several countries and by the main Nephrology Societies. However, this practice is widespread and is allowed or tolerated in many countries, hence, in the absence of a universal law, the caregiver may be asked for advice, placing him/her in a difficult balance between legal aspects, moral principles and ethical judgments.

In spite of the Istanbul declaration, which is a widely shared position statement against organ trafficking, the controversy on mercenary organ donation is still open and some experts argue against taking a negative stance. In the absence of clear evidence showing the clinical disadvantages of mercenary transplantation compared to chronic dialysis, self-determination of the patient (and, with several caveats, of the donor) may conflict with other ethical principles, first of all non-maleficence. The present paper was drawn up with the participation of the students, as part of the ethics course at our medical school. It discusses the situation in which the physician acts as a counselor for the patient in the way of a sort of “reverse” informed consent, in which the patient asks advice regarding a complex personal decision, and includes a peculiar application of the four principles (beneficence, non-maleficence, justice and autonomy) to the donor and recipient parties.

A charter for biomedical research ethics in a progressive, caring society

Sylvie Vandoolaeghe, Alessandra Blaizot, Danie Boudiguet, Valérie Bougault, Eduardo Dei Cas, Benoît Foligne, Anne Goffard, Hélène Lefranc, Bénédicte Oxombre, Thomas Trentesaux, Bernard Vandenbunder, Isabelle Wolowczuk, Laurence Delhaes

Background

Given that advances in research continuously raise new ethical issues, a multidisciplinary working group of investigators involved in biomedical research has gathered to discuss and compare ethical viewpoints in their daily practice.

Methods

The working group has drafted a Charter for Ethics in Biomedical Research that encompasses all the steps in the research process, i.e. from the initial idea to analysis and publication of the results.

Results

Based on key principles for ethically responsible research, the Charter may serve as a tool for performing research, discussing research issues and training researchers.

Conclusions

The Charter should stimulate researchers to think about their responsibility for research in a progressive, caring society.

Medical professionalism: what the study of literature can contribute to the conversation

Johanna Shapiro, Lois L. Nixon, Stephen E. Wear, David J. Doukas

Medical school curricula, although traditionally and historically dominated by science, have generally accepted, appreciated, and welcomed the inclusion of literature over the past several decades. Recent concerns about medical professional formation have led to discussions about the specific role and contribution of literature and stories. In this article, we demonstrate how professionalism and the study of literature can be brought into relationship through critical and interrogative interactions based in the literary skill of close reading. Literature in medicine can question the meaning of “professionalism” itself (as well as its virtues), thereby resisting standardization in favor of diversity method and of outcome. Literature can also actively engage learners with questions about the human condition, providing a larger context within which to consider professional identity formation. Our fundamental contention is that, within a medical education framework, literature is highly suited to assist learners in questioning conventional thinking and assumptions about various dimensions of professionalism.

‘Trust my doctor, trust my pancreas’: trust as an emergent quality of social practice

Simon Cohn

Background

Growing attention is being paid to the importance of trust, and its corollaries such as mistrust and distrust, in health service and the central place they have in assessments of quality of care. Although initially focussing on doctor-patient relationships, more recent literature has broadened its remit to include trust held in more abstract entities, such as organisations and institutions. There has consequently been growing interest to develop rigorous and universal measures of trust.

Methods

Drawing on illustrative ethnographic material from observational research in a UK diabetes clinic, this paper supports an approach that foregrounds social practice and resists conceiving trust as solely a psychological state that can be divorced from its context. Beyond exploring the less-than-conscious nature of trust, the interpretations attend to the extent to which trust practices are distributed across a range of actors.

Results

Data from clinical encounters reveal the extent to which matters of trust can emerge from the relationships between people, and sometimes people and things, as a result of a wide range of pragmatic concerns, and hence can usefully be conceived of as an extended property of a situation rather than a person. Trust is rarely explicitly articulated, but remains a subtle feature of experience that is frequently ineffable.

Conclusions

A practice approach highlights some of the problems with adopting a general psychological or intellectualist conception of trust. In particular, assuming it is a sufficiently stable internal state that can be stored or measured not only transforms a diffuse and often ephemeral quality into a durable thing, but ultimately presents it as a generic state that has meaning independent of the specific relationships and context that achieve it. Emphasising the context-specific nature of trust practices does not dismiss the potential of matters of trust, when they emerge, to be transposed to other contexts. But it does highlight how, on each occasion, trust as a relational quality is ways ‘done’ or ‘achieved’ anew.

“Arm in arm with righteousness”

Iona Heath

My title comes from Joseph Conrad who, in his 1913 novel Chance, wrote:

You know the power of words. We pass through periods dominated by this or that word – it may be development, or it may be competition, or education, or purity or efficiency or even sanctity. It is the word of the time. Well just then it was the word Thrift which was out in the streets walking arm in arm with righteousness, the inseparable companion and backer up of all such national catch-words, looking everybody in the eye as it were [1].

Today, the word is quality, out in the streets walking arm in arm with righteousness, with all the self-satisfaction that implies. The fundamental problem with all such national catch-words is that they all too seldom have real substance and all too often become slogans used in the exercise of power.

An explanation and analysis of how world religions formulate their ethical decisions on withdrawing treatment and determining death

Susan M Setta, Sam D Shemie

Introduction

This paper explores definitions of death from the perspectives of several world and indigenous religions, with practical application for health care providers in relation to end of life decisions and organ and tissue donation after death. It provides background material on several traditions and explains how different religions derive their conclusions for end of life decisions from the ethical guidelines they proffer.

Methods

Research took several forms beginning with a review of books and articles written by ethicists and observers of Bön, Buddhism, Christianity, Hinduism, Indigenous Traditions, Islam, Judaism, Shinto and Taoism. It then examined sources to which these authors referred in footnotes and bibliographies. In addition, material was gathered through searches of data bases in religious studies, general humanities, social sciences and medicine along with web-based key word searches for current policies in various traditions.

Results

Religious traditions provide their adherents with explanations for the meaning and purpose of life and include ethical analysis for the situations in which their followers find themselves. This paper aims to increase cultural competency in practitioners by demonstrating the reasoning process religions use to determine what they believe to be the correct decision in the face of death.

Conclusion

Patterns emerge in the comparative study of religious perspectives on death. Western traditions show their rootedness in Judaism in their understanding of the human individual as a finite, singular creation. Although the many branches of Western religions do not agree on precisely how to determine death, they are all able to locate a moment of death in the body. In Eastern traditions personhood is not defined in physical terms. From prescribing the location of death, to resisting medical intervention and definitions of death, Eastern religions, in their many forms, incorporate the beliefs and practices that preceded them. Adding to the complexity for these traditions is the idea that death is a process that continues after the body has met most empirical criteria for determining death. For Hinduism and Buddhism, the cessation of heart, brain and lung function is the beginning of the process of dying—not the end.

Explaining and responding to the Ebola epidemic

Solomon Benatar

The Ebola epidemic in West Africa is not merely a biomedical problem that can be seen in isolation and dealt with only through emergency medical rescue processes. The ethical dilemmas surfaced by this epidemic are also not confined to the usual micro-ethical problems associated with medical care and medical research. The pandemic, as one of many manifestations of failed human and social development that has brought the world to dangerous ‘tipping points’, requires deep introspection and action to address upstream causal processes.

Luria revisited: cognitive research in schizophrenia, past implications and future challenges

Yuliya Zaytseva, Raymond CK Chan, Ernst Pöppel, Andreas Heinz

Contemporary psychiatry is becoming more biologically oriented in the attempt to elicit a biological rationale of mental diseases. Although mental disorders comprise mostly functional abnormalities, there is a substantial overlap between neurology and psychiatry in addressing cognitive disturbances. In schizophrenia, the presence of cognitive impairment prior to the onset of psychosis and early after its manifestation suggests that some neurocognitive abnormalities precede the onset of psychosis and may represent a trait marker. These cognitive alterations may arise from functional disconnectivity, as no significant brain damage has been found. In this review we aim to revise A.R. Luria’s systematic approach used in the neuropsychological evaluation of cognitive functions, which was primarily applied in patients with neurological disorders and in the cognitive evaluation in schizophrenia and other related disorders. As proposed by Luria, cognitive processes, associated with higher cortical functions, may represent functional systems that are not localized in narrow, circumscribed areas of the brain, but occur among groups of concertedly working brain structures, each of which makes its own particular contribution to the organization of the functional system. Current developments in neuroscience provide evidence of functional connectivity in the brain. Therefore, Luria’s approach may serve as a frame of reference for the analysis and interpretation of cognitive functions in general and their abnormalities in schizophrenia in particular. Having said that, modern technology, as well as experimental evidence, may help us to understand the brain better and lead us towards creating a new classification of cognitive functions. In schizophrenia research, multidisciplinary approaches must be utilized to address specific cognitive alterations. The relationships among the components of cognitive functions derived from the functional connectivity of the brain may provide an insight into cognitive machinery.

Erasing traumatic memories: when context and social interests can outweigh personal autonomy

Andrea Lavazza

Neuroscientific research on the removal of unpleasant and traumatic memories is still at a very early stage, but is making rapid progress and has stirred a significant philosophical and neuroethical debate. Even if memory is considered to be a fundamental element of personal identity, in the context of memory-erasing the autonomy of decision-making seems prevailing. However, there seem to be situations where the overall context in which people might choose to intervene on their memories would lead to view those actions as counterproductive. In this article, I outline situations where the so-called composition effects can produce negative results for everyone involved, even if the individual decisions are not as such negative. In such situations medical treatments that usually everyone should be free to take, following the principle of autonomy, can make it so that the personal autonomy of the individuals in the group considered is damaged or even destroyed. In these specific cases, in which what is called the “conformity to context” prevails, the moral admissibility of procedures of memory-erasing is called into question and the principle of personal autonomy turns out to be subordinate to social interests benefitting every member of the group.

The right to health, health systems development and public health policy challenges in Chad

Jacquineau Azétsop, Michael Ochieng

Background

There is increasing consensus that the right to health can provide ethical, policy and practical groundings for health systems development. The goals of the right to health are congruent with those of health systems development, which are about strengthening health promotion organizations and actions so as to improve public health. The poor shape and performance of health systems in Chad question the extent of realization of the right to health. Due to its comprehensiveness and inclusiveness, the right to health has the potential of being an organizational and a normative backbone for public health policy and practice. It can then be understood and studied as an integral component of health systems development.

Method

This paper uses a secondary data analysis of existing documents by the Ministry of Public Health, Institut National de la Statistique, des Etudes Economiques et Démographiques (INSEED), the Ministry of Economy and Agence Française de Cooperation to analyze critically the shape and performance of health systems in Chad based on key concepts and components of the right to health contained in article 12 of the International Covenant on Economic, Social and Cultural Rights, and on General Comment 14.

Results

The non-realization of the right to health, even in a consistently progressive manner, raises concerns about the political commitment of state officials to public health, about the justice of social institutions in ensuring social well-being and about individual and public values that shape decision-making processes. Social justice, democratic rule, transparency, accountability and subsidiarity are important groundings for ensuring community participation in public affairs and for monitoring the performance of public institutions.

Conclusion

The normative ideals of health systems development are essentially democratic in nature and are rooted in human rights and in ethical principles of human dignity, equality, non-discrimination and social justice. These ideals are grounded in an integrated vision of society as a place for multi-level interactions, where government plays its role by equitably providing institutions and services that ensure people’s welfare. Inter-sectoral collaboration, which calls for a conceptual shift in health and public policy, can be instrumental in improving health systems through concerted efforts of various governmental institutions and civil society.

The ethics of animal research: a survey of pediatric health care workers

Ari R Joffe, Meredith Bara, Natalie Anton, Nathan Nobis

Introduction

Pediatric health care workers (HCW) often perform, promote, and advocate use of public funds for animal research (AR). We aim to determine whether HCW consider common arguments (and counterarguments) in support (or not) of AR convincing.

Design

After development and validation, an e-mail survey was sent to all pediatricians and pediatric intensive care unit nurses and respiratory therapists (RTs) affiliated with a Canadian University. We presented questions about demographics, support for AR, and common arguments (with their counterarguments) to justify the moral permissibility (or not) of AR. Responses are reported using standard tabulations. Responses of pediatricians and nurses/RTs were compared using Chi-square, with P < .05 considered significant.

Results

Response rate was 53/115(46%) (pediatricians), and 73/120(61%) (nurses/RTs). Pediatricians and nurses/RTs are supportive of AR. Most considered ‘benefits arguments’ sufficient to justify AR; however, most acknowledged that counterarguments suggesting alternative research methods may be available, or that it is unclear why the same ‘benefits arguments’ do not apply to using humans in research, significantly weakened ‘benefits arguments’. Almost all were not convinced of the moral permissibility of AR by ‘characteristics of non-human-animals arguments’, including that non-human-animals may not be sentient, or are simply property. Most were not convinced of the moral permissibility of AR by ‘human exceptionalism’ arguments, including that humans have more advanced mental abilities, are of a special ‘kind’, can enter into social contracts, or face a ‘lifeboat situation’. Counterarguments explained much of this, including that not all humans have these more advanced abilities [the argument from species overlap], and that the notion of ‘kind’ is arbitrary [e.g., why are we not of the kind ‘sentient animal’ or ‘subject-of-a-life’]. Pediatrician and nurse/RT responses were similar.

Conclusions

Most respondents were not convinced of the moral permissibility of AR when given common arguments and counterarguments from the literature. HCW should seriously consider arguments on both sides of the AR debate.

 

Science as Culture

Intentions, Expectations and Institutions: Engineering the Future of Synthetic Biology in the USA and the UK

Pablo Schyfter, Jane Calvert

Synthetic biology is a field in-the-making: a loosely defined amalgamation of diverse disciplines, institutions and practices. Where some practitioners identify as scientists, others consider themselves engineers; while some extol the simplicity of standardised biology, others dismiss it as counterproductive. Three different communities in synthetic biology (epistemics, sceptical constructors and committed engineers) can be distinguished by way of their intentions, practices and promises. Synthetic biologists’ promises shape policy-makers’ expectations, which in turn shape institutional arrangements. These institutional arrangements then influence practitioners’ promises in an iterative fashion. In both the USA and the UK, ‘committed engineers’ have succeeded in gaining support for an engineering-based and industry-centred vision of synthetic biology, which promises applications and economic growth. This group’s intentions and promises have influenced policy-makers’ expectations, which, in turn, have driven the major institutional developments in synthetic biology in the two countries. However, while the promises of the economic potential of this vision of the field have been embraced at policy levels, other aspects of this vision, such as the importance of enabling infrastructure, are often overlooked. In a sense, committed engineers’ promises and rhetoric have been too successful, because they have overshadowed the institutional and infrastructural developments needed to make them a reality.

Accountability from Somewhere and for Someone: Relating with Care

Sonja Jerak-Zuiderent

In contemporary care institutions, accountability procedures and devices are increasingly pervasive and considered crucial for monitoring quality. Such accountability practices are based on the idea that accountability and care belong in two separate domains. The distinction between accountability ‘from nowhere and for everyone’ and accountability ‘from somewhere and for someone’ problematises this implicit split. Taking seriously the observations of everyday caring and accounting by care professionals, who resist splitting care and accountability from the outset, demands a reconceptualisation of the relation between care and accountability as reciprocal and co-emerging. Both accountability and care are highly circumstantial, emerging, relational notions and it is not clear-cut who or what cares or accounts for what, whom, where and how. Paying due attention to the generative interweaving of accounting and caring, that is, to the narrative work of care professionals, affords the potential to turn universal abstract norms of what good care should be into meaningful care. Creatively reconnecting care experiences, observations, records and relations generates accountability with care. Care professionals do this by daring to prioritise speculatively what matters most in a specific situation without falling back on the reassurance of clear-cut norms of good care and by daring to admit that even while prioritising a certain course of action, they might not know its consequences. Such a speculative commitment and the inclusion of the researcher’s experiences in trying to be accountable are crucial for studying accountability as a matter of care and as relatedness in the making.

Data Karaoke: Sensory and Bodily Skills in Conference Presentations

Alexandra Supper

At the International Conference on Auditory Display (ICAD), an interdisciplinary conference dedicated to sonification and the use of non-speech sound to represent information, presenters make use of a variety of bodily skills and representations that appeal to the senses of their audience. In many established disciplines, the conventions that guide the use of these skills and representations are taken for granted; but within ICAD, they are often explicitly negotiated. The practice of ‘data karaoke’, in which researchers mimic the sound of a sonification with their own voice, is particularly instructive for understanding these negotiations, and the ICAD community more generally. Data karaoke fulfils five functions: embodiment, highlighting, illustration, authorisation and integration. To make sense of data karaoke, we have to understand the institutional and intellectual environment in which this peculiar practice has emerged; but conversely, an understanding of data karaoke can help us throw new light on epistemological debates about the hierarchy of the senses: data karaoke is a multisensory skill engaging the whole body of the sonification researcher, and thus calls into question the dominant epistemological discourse within the ICAD community, in which the different sensory modalities are framed as competitors. The ICAD case shows that studying conferences as sites where bodies interact, and presentations as performances involving the bodies and senses of scientists, helps us to understand not only the conference cultures, but also the ideals about scientific scholarship and academic authority held by scientific communities.

Cyborgs in the Everyday: Masculinity and Biosensing Prostate Cancer

Gill Haddow, Emma King, Ian Kunkler, Duncan McLaren

An in vivo biosensor is a technology in development that will assess the biological activity of cancers to individualise external beam radiotherapy. Inserting such technology into the human body creates cybernetic organisms; a cyborg that is a human–machine hybrid. There is a gap in knowledge relating to patient willingness to allow automated technology to be embedded and to become cyborg. There is little agreement around what makes a cyborg and less understanding of the variation in the cyborgisation process. Understanding the viewpoint of possible beneficiaries addresses such gaps. There are currently three versions of ‘cyborg’ in the literature (i) a critical feminist STS concept to destabilise power inherent in dualisms, (ii) an extreme version of the human/machine in science-fiction that emphasises the ‘man’ in human and (iii) a prediction of internal physiological adaptation required for future space exploration. Interview study findings with 12 men in remission from prostate cancer show a fourth version can be used to describe current and future sub-groups of the population; ‘everyday cyborgs’. For the everyday cyborg the masculine cyborg status found in the fictionalised human–machine related to issues of control of the cancer. This was preferred to the felt stigmatisation of being a ‘leaker and bleeder’. The willingness to become cyborg was matched with a having to get used to the everyday cyborg’s technological adaptations and risks. It is crucial to explore the everyday cyborg’s sometimes ambivalent viewpoint. The everyday cyborg thus adds the dimension of participant voice currently missing in existing cyborg literatures and imaginations.

Conceptualising Decadent Technology: A Case Study of Path Dependence in Radiotherapy

Lisa Wood

Large-scale investments in health technologies often have limited evidence for effectiveness when first introduced. Nevertheless, professional and public discourses often present the advantages of such investments, with unknown risks, as necessary and entailing significant improvement. Such discourses are evident with the introduction of the Linac Adapted Conebeam Imager (LACI), introduced to improve the accuracy of radiotherapy treatments. From one perspective, the introduction of such technologies can be considered to be decadent since there is limited, if any, evidence of improvement of current standards and procedures, yet they are promoted as the latest and best technologies for solving societal problems. Connecting the concepts of decadence to those of path dependence, through the case of the LACI, enables the exploration of the ‘technical interrelatedness’ of technological changes. Building on the concept of path dependence, it is possible to demonstrate how introducing a closely related technology does not only become a low-risk course of action. Rather change is demanded (but not determined) as well as potential alternative systems being obscured. With decadent technologies, any future changes are not only dependent upon past introductions; but also they create a need for future changes. Such a view demonstrates how these technologies may not necessarily offer any improvements, but rather contribute to the creation of ongoing demand for unproven technologies. As a result they may encourage the introduction of increasingly complex technologies.

 

Social History of Medicine

Women Searchers of the Dead in Eighteenth- and Nineteenth-century London

Wanda S. Henry

From plague epidemics in Elizabethan England to cholera outbreaks in the early Victorian era, women determined causes of death for London parishes. Despite criticism about lack of medical training, parishes continued to rely upon women searchers and expanded their responsibilities during the eighteenth century while looking not to midwives and nurses but female relatives of parish workers to fill open positions. Sextonesses and pew keepers became searchers of the dead and served lengthy terms in office. Historians have assumed that Parliament established the General Register Office to supplant searchers with medical men, acting as registrars. However, the transition away from the bills depended more upon the parish’s loss of monopoly on the death business than the medical failings of women searchers. By the mid-nineteenth century, the undertaking industry managed London’s dead, and undertakers, rather than medical men, replaced women searchers as reporters of cause of death.

Harnessing the Power of Difference: Colonialism and British Chronic Disease Research, 1940–1975

Martin D. Moore

Recent studies of post-war chronic disease epidemiology have generally focused on the histories of research in the USA and UK. Using the archival records of a major British funding body, the Colonial Medical Research Committee and its successor the Tropical Medical Research Board, this article demonstrates the advantages of bringing a post-colonial analytic to this historiography. It highlights how the administrative and medical interests in population difference at the centre of the new epidemiology came to map onto political apparatus initially created to know, reform and govern colonial subjects. Although detached from imperial aims, British medical scientists nonetheless attached value to colonial populations on the basis of British benefit and turned various sites into laboratories to extract it. This relationship did not die with the end of imperial rule. British scientists continued to pursue chronic disease epidemiology in former colonies well into the post-war period, informing debates about Britain’s own public health concerns.

 

Social Science & Medicine 

“Thinking too much”: A systematic review of a common idiom of distress

Bonnie N. Kaiser, Emily E. Haroz, Brandon A. Kohrt, Paul A. Bolton, Judith K. Bass, Devon E. Hinton

Idioms of distress communicate suffering via reference to shared ethnopsychologies, and better understanding of idioms of distress can contribute to effective clinical and public health communication. This systematic review is a qualitative synthesis of “thinking too much” idioms globally, to determine their applicability and variability across cultures. We searched eight databases and retained publications if they included empirical quantitative, qualitative, or mixed-methods research regarding a “thinking too much” idiom and were in English. In total, 138 publications from 1979 to 2014 met inclusion criteria. We examined the descriptive epidemiology, phenomenology, etiology, and course of “thinking too much” idioms and compared them to psychiatric constructs. “Thinking too much” idioms typically reference ruminative, intrusive, and anxious thoughts and result in a range of perceived complications, physical and mental illnesses, or even death. These idioms appear to have variable overlap with common psychiatric constructs, including depression, anxiety, and PTSD. However, “thinking too much” idioms reflect aspects of experience, distress, and social positioning not captured by psychiatric diagnoses and often show wide within-cultural variation, in addition to between-cultural differences. Taken together, these findings suggest that “thinking too much” should not be interpreted as a gloss for psychiatric disorder nor assumed to be a unitary symptom or syndrome within a culture. We suggest five key ways in which engagement with “thinking too much” idioms can improve global mental health research and interventions: it (1) incorporates a key idiom of distress into measurement and screening to improve validity of efforts at identifying those in need of services and tracking treatment outcomes; (2) facilitates exploration of ethnopsychology in order to bolster cultural appropriateness of interventions; (3) strengthens public health communication to encourage engagement in treatment; (4) reduces stigma by enhancing understanding, promoting treatment-seeking, and avoiding unintentionally contributing to stigmatization; and (5) identifies a key locally salient treatment target.

Transgender stigma and health: A critical review of stigma determinants, mechanisms, and interventions

Jaclyn M. White Hughto, Sari L. Reisner, John E. Pachankis

Rationale

Transgender people in the United States experience widespread prejudice, discrimination, violence, and other forms of stigma.

Objective

This critical review aims to integrate the literature on stigma towards transgender people in the US.

Results

This review demonstrates that transgender stigma limits opportunities and access to resources in a number of critical domains (e.g., employment, healthcare), persistently affecting the physical and mental health of transgender people. The applied social ecological model employed here elucidates that transgender stigma operates at multiple levels (i.e., individual, interpersonal, structural) to impact health. Stigma prevention and coping interventions hold promise for reducing stigma and its adverse health-related effects in transgender populations.

Conclusion

Additional research is needed to document the causal relationship between stigma and adverse health as well as the mediators and moderators of stigma in US transgender populations. Multi-level interventions to prevent stigma towards transgender people are warranted.

New norms new policies: Did the Adelaide Thinkers in Residence scheme encourage new thinking about promoting well-being and Health in All Policies?

Fran Baum, Angela Lawless, Colin MacDougall, Toni Delany, Dennis McDermott, Elizabeth Harris, Carmel Williams

Health systems have long been criticised for focussing on curing rather than preventing disease. This paper examines to what extent the Adelaide Thinkers in Residence (ATiR) scheme contributed to the change in norms whereby promoting well-being and a strategy to achieve this – Health in All Policies (HiAP) – was adopted by the South Australian (SA) State Government from 2007. The data presented in this paper are drawn from a five year (2012–2016) detailed mixed methods case study of the SA HiAP initiative which involved document analysis, interviews and workshops with public servants and political actors. We adapt the framework used by Finnemore and Sikkink (1998) which explains how norm changes can lead to political changes in international affairs. We also use Kingdon’s concept of policy entrepreneurs to determine whether these ideas moved to an implementable initiative with the help of both a specific ATiR program on HiAP and the broader TiR scheme which promoted a series of innovations relevant to health. The process involved the ATiR reinforcing the work of local norm entrepreneurs with that of powerful external policy entrepreneurs, adapting the discourse about the value of prevention and promoting well-being so that it fitted with the dominant economic one. The powerful organisational platform of the ATiR, which was under the Department of the Premier and Cabinet and linked to the South Australian Strategic Plan (SASP) was used to advance these ideas. The case study offers important lessons for other jurisdictions on how to shift policy to encourage intersectoral approaches to health.

Gendering gametes: The unequal contributions of sperm and egg donors

Rosanna Hertz, Margaret K. Nelson, Wendy Kramer

This paper compares three groups of gestational mothers who relied on gametes from donors they did not know. The three groups are women who have conceived with donor sperm and their own eggs, women who have conceived with donor eggs and a partner’s sperm, and women who have conceived with embryos composed of both donor eggs and donor sperm. The paper explores three issues. First, it considers whether intending parents select sperm and egg donors for different attributes both when they are chosen as the only donor and when they are chosen as donors contributing to an entire embryo. Second, it examines how women imagine the donor. Finally, it looks at how women conceptualize the donor as an individual who contributes to their child’s characteristics. Two significant findings emerged in this analysis of survey data. First, the data show that gametes are gendered with different attributes both when those gametes are separate and even more so when seen as complementary parts of a whole. Second, the data show that women minimize the impact of the egg donor (both when a sole contribution and especially when part of the complementary whole) and thus ignore the influence or impact of the egg donor relative to how they make sense of the influence or impact of the sperm donor. The data for this study comes from an online survey developed by the authors.

Is socioeconomic incorporation associated with a healthier diet? Dietary patterns among Mexican-origin children in the United States

Molly A. Martin, Jennifer L. Van Hook, Susana Quiros

With each successive generation in the United States, Mexican-origin families lose their initial dietary advantages. Focusing on children’s diets, we ask whether greater socioeconomic status (SES) can help buffer Mexican-origin children in immigrant families from negative dietary acculturation or whether it exacerbates these dietary risks. Pooling data from the 1999 to 2009 waves of the continuous National Health and Nutrition Examination Survey, we test whether the association between generational status and Mexican-origin children’s nutrition varies by the family’s SES. When predicting children’s overall dietary quality using the Healthy Eating Index (2010) and predicting unhealthy dietary patterns, we find stronger evidence of segmented assimilation, whereby greater family average SES is associated with better diets across generations of Mexican-origin children. High-status Mexican-origin parents appear able to buffer their children against generational dietary declines documented in the acculturation literature.

Therapeutic landscapes of home: Exploring Indigenous peoples’ experiences of a Housing First intervention in Winnipeg

Dominic A. Alaazi, Jeffrey R. Masuda, Joshua Evans, Jino Distasio

In this paper, we explore Indigenous perspectives of culture, place, and health among participants in a landmark Canadian Housing First initiative: At Home/Chez Soi (AHCS) project. Implemented from 2009 to 2013 in Winnipeg and four other Canadian cities, AHCS was a multi-city randomized control trial that sought to test the effectiveness of Housing First as a model for addressing chronic homelessness among people living with mental illnesses. As Winnipeg’s homeless population is over 70% Indigenous, significant efforts were made to accommodate the culturally specific health, spiritual, and lifestyle preferences of the project’s Indigenous participants. While a daunting challenge from an intervention perspective, Winnipeg’s experience also provides a unique opportunity to examine how Indigenous participants’ experiences can inform improved housing and mental health policy in Canada. In our study, conducted independently from, but with endorsement of the AHCS project, we utilized a case study approach to explore the experiences of the project’s Indigenous participants. Data were collected by means of in-depth qualitative interviews with Indigenous participants (N = 14) and key informant project staff and investigators (N = 6). Our exploratory work demonstrates that despite relative satisfaction with the AHCS intervention, Indigenous peoples’ sense of place in the city remains largely disconnected from their housing experiences. We found that structural factors, particularly the shortage of affordable housing and systemic erasure of Indigeneity from the urban sociocultural and political landscape, have adversely impacted Indigenous peoples’ sense of place and home.

Relationship dynamics around depression in gay and lesbian couples

Mieke Beth Thomeer, Corinne Reczek, Debra Umberson

Research on intimate relationship dynamics around depression has primarily focused on heterosexual couples. This body of work shows that wives are more likely than husbands to offer support to a depressed spouse. Moreover, when wives are depressed, they are more likely than husbands to try and shield their spouse from the stress of their own depression. Yet, previous research has not examined depression and relationship dynamics in gay and lesbian couples. We analyze in-depth interviews with 26 gay and lesbian couples (N = 52 individuals) in which one or both partners reported depression. We find evidence that dominant gender scripts are both upheld and challenged within gay and lesbian couples, providing important insight into how gender operates in relation to depression within same-sex contexts. Our results indicate that most gay and lesbian partners offer support to a depressed partner, yet lesbian couples tend to follow a unique pattern in that they provide support both as the non-depressed and depressed partner. Support around depression is sometimes viewed as improving the relationship, but if the support is intensive or rejected, it is often viewed as contributing to relationship strain. Support is also sometimes withdrawn by the non-depressed partner because of caregiver exhaustion or the perception that the support is unhelpful. This study points to the importance of considering depression within gay and lesbian relational contexts, revealing new ways support sustains and strains intimate partnerships. We emphasize the usefulness of deploying couple-level approaches to better understand depression in sexual minority populations.

School-level contextual predictors of bullying and harassment experiences among adolescents

Amy L. Gower, Barbara J. McMorris, Marla E. Eisenberg

Background

Bullying and prejudice-based harassment frequently occur in school settings and have significant consequences for the health and wellbeing of young people. Yet far fewer studies have examined the role of the school environment in peer harassment than individual factors. This multilevel study examined associations between a variety of school-level risk and protective factors and student-level reports of bullying and prejudice-based harassment during adolescence.

Methods

Data come from 8th, 9th, and 11th graders who completed the 2013 Minnesota Student Survey (N = 122,180 students nested in 505 schools). School-level variables were created by aggregating student report data in five areas: academic orientation to school, internal assets, teacher–student relationship quality, feelings of safety at school, and receipt of disciplinary action.

Results

Results indicated that youth attending schools with a higher proportion of students with strong internal assets had lower odds of nearly every type of bullying and prejudice-based harassment assessed when compared to youth attending schools with a lower proportion of students with strong internal assets. Additionally, the proportion of students feeling unsafe at school was a fairly consistent risk factor for most types of peer harassment.

Conclusion

Findings support the idea that prevention programs aimed at improving school-wide internal assets and feelings of safety at school may be key prevention points.

Hymen reconstruction as pragmatic empowerment? Results of a qualitative study from Tunisia

Verina Wild, Hinda Poulin, Christopher W. McDougall, Andrea Stöckl, Nikola Biller-Andorno

Hymen reconstruction surgery (HR), while ethically controversial, is now available in many countries. Little clinical evidence and hardly any surgical standards support the intervention. Nearly as scarce is social science research exploring women’s motivations for the intervention, and health care professionals’ justifications for its provision.

In order to better understand decision-making processes, we conducted semi-structured interviews in metropolitan Tunis, in 2009, with six women seeking the procedure, four friends who supported such women, four physicians who perform the operation, and one midwife.

Health care professionals and patient companions expressed moral ambivalence about HR: although they could comprehend the individual situation of the women, they expressed concern that availability of the procedure might further entrench the patriarchal norms that compel the motivation for seeking HR in the first place. Some women seeking HR shared this concern, but felt it was not outweighed by their personal aims, which were to marry and become mothers, or to overcome past violent sexual experiences. The women felt HR to be uniquely helpful in achieving these aims; all made pragmatic decisions about their bodies in a social environment dominated by patriarchal norms. The link between HR and pervasive gender injustice, including the credible threat of serious social and physical harm to women perceived to have failed to uphold the norm of virginity before marriage, raises questions about health care professionals’ responsibility while facing requests for HR. Meaningful regulatory guidance must acknowledge that these genuine harms are at stake; it must do so, however, without resorting to moral double standards. We recommend a reframing of HR as a temporary resource for some women making pragmatic choices in a context of structural gender injustice. We reconfirm the importance of factual sexual and reproductive education, most importantly to counter distorted beliefs that conflate an “intact hymen” with virginity.

Illness related wage and productivity losses: Valuing ‘presenteeism’

Wei Zhang, Huiying Sun, Simon Woodcock, Aslam Anis

One source of productivity loss due to illness is the reduced “quantity” or “quality” of labor input while working, often referred to as presenteeism. Illness-related presenteeism has been found to be potentially more costly than absenteeism. To value presenteeism, existing methods use wages as a proxy for marginal productivity at the firm level. However, wage may not equal marginal productivity in some scenarios. One instance is when a job involves team production and perfect substitutes for workers are not readily available. Using a Canadian linked employer-employee survey (2001–2005), we test whether relative wage equals relative marginal productivity among team workers and non-team workers with different frequencies of presenteeism (reduction at work due to illness). For the pooled cross-sectional estimates (2001, 2003, 2005) we obtain 13,755 observations with 6842 unique workplaces. There are 6490 observations for the first differences estimates from the odd years and 5263 observations for the first differences estimates from 2001 to 2002 and 2003 to 2004. We find that in both small and large firms, team workers with frequent reductions at work are less productive but earn similarly compared with non-team workers without reductions. We also find that in small firms, workers with occasional work reductions are more productive than workers without reductions, but the reverse is true in large firms. The study findings partially support the literature stating that productivity loss resulting from employee presenteeism could exceed wages if team work is involved.

Effectiveness of group discussions and commitment in improving cleaning behaviour of shared sanitation users in Kampala, Uganda slums

Innocent K. Tumwebaze, Hans-Joachim Mosler

Rationale and objective

Access to and use of hygienic shared sanitation facilities is fundamental in reducing the high risk of diseases such as diarrhoea and respiratory infections. We evaluated the effectiveness of group discussions and commitment in improving the cleaning behaviour of shared sanitation users in three urban slums in Kampala, Uganda. The study follows the risk, attitudes, norms, abilities and self-regulation (RANAS) model of behaviour change and some factors of the social dilemma theory.

Methods

A pre-versus post-intervention survey was conducted in three slums of Kampala, Uganda, between December 2012 and September 2013. From the pre-intervention findings, users of dirty sanitation facilities were randomly assigned to discussions, discussions + commitment and control interventions. The interventions were implemented for 3 months with the aim of improving cleaning behaviour. This paper provides an analysis of 119 respondents who belonged to the intervention discussion-only (n = 38), discussions + commitment (n = 41) and the control (no intervention, n = 40) groups.

Results

Compared to the control, discussions and discussions + commitment significantly improved shared toilet users’ cleaning behaviour. The rate of improvement was observed through behavioural determinants such as cleaning obligation, cleaning ease, cleaning approval and affective beliefs.

Conclusion

Our study findings show that group discussions and commitment interventions derived from RANAS model of behaviour change are effective in improving the shared sanitation users’ cleaning behaviour.

Nationwide expansion of a financial incentive program on fruit and vegetable purchases among Supplemental Nutrition Assistance Program participants: A cost-effectiveness analysis

Ruopeng An

High prices remain a formidable barrier for many people, especially those of low socioeconomic status, to adopt a healthier diet. The Food, Conservation, and Energy Act of 2008 mandated the U.S. Department of Agriculture (USDA) to conduct a pilot study to assess the impact of making fruits and vegetables more affordable for households in the Supplemental Nutrition Assistance Program (SNAP). Based on the USDA final report of the Healthy Incentives Pilot (HIP), a large-scale randomized trial in 2011–2012 that provided 30% rebate on targeted fruits and vegetables to 7500 study participants enrolled in the SNAP, we constructed a decision model to evaluate the cost-effectiveness of an expansion of the HIP to all SNAP households nationwide. The estimated life-time per capita costs of the HIP to the Federal government is $1323 in 2012 U.S. dollars, and the average gains in quality-adjusted life expectancy to a SNAP participant is 0.082 quality-adjusted life year (QALY), resulting in an incremental cost-effectiveness ratio (ICER) of $16,172 per QALY gained. Sensitivity analysis using Monte Carlo simulations indicates a 94.4% and 99.6% probability that the estimated ICER would be lower than the cost-effective threshold of $50,000 and $100,000 per QALY gained, respectively. Moreover, the estimated ICER of the HIP expansion tends to be competitive in comparison to other interventions that aimed at promoting fruit/vegetable intake among adult population. Findings from this study suggest that a nationwide expansion of the HIP is likely to nudge SNAP households towards purchasing and consuming more targeted fruits and vegetables. However, diet behavior modification is proportional to price change. When people’s actual eating behaviors and what dietary guidelines recommend differ by several folds, even a 30% rebate closes just a small fraction of that gap and has limited beneficial impact on participants’ weight management, disease prevention, and health-related quality of life.

Migration as a social determinant of health for irregular migrants: Israel as case study

Yonina Fleischman, Sarah S. Willen, Nadav Davidovitch, Zohar Mor

More than 150,000 irregular migrants reside in Israel, yet data regarding their utilization of and perceived barriers to health care services are limited. Drawing on semi-structured interviews conducted with 35 irregular migrant adults between January and September 2012, this article analyzes the role of migration as a social determinant of health for irregular migrants, and especially asylum seekers. We analyze two kinds of barriers faced by migrants when they attempt to access health care services: barriers resulting directly from their migration status, and barriers that are common among low-income communities but exacerbated by this status. Migration-related barriers included a lack of clear or consistent legislation; the threat of deportation; the inability to obtain work permits and resulting poverty and harsh living and working conditions; and discrimination. Barriers exacerbated by migrant status included prohibitive cost; poor and confusing organization of services; language barriers; perceived low quality of care; and social isolation. These findings support recent arguments that migrant status itself constitutes a social determinant of health that can intersect with other determinants to adversely affect health care access and health outcomes. Findings suggest that any meaningful effort to improve migrants’ health will depend on the willingness of clinicians, public health officials, and policymakers to address the complex array of upstream political and socio-economic factors that affect migrants’ health rather than focusing on narrower questions of access to health care.

Maternal healthcare in context: A qualitative study of women’s tactics to improve their experience of public healthcare in rural Burkina Faso

Lise Rosendal Østergaard

Improving the use of public maternal health facilities to prevent maternal death is a priority in developing countries. Accumulating evidence suggests that a key factor in choosing a facility-based delivery is the collaboration and the communication between healthcare providers and women. This article attempts to provide a fine-grained understanding of health system deficiencies, healthcare provider practices and women’s experiences with maternal public healthcare.

This article presents findings from ethnographic research conducted in the Central-East Region of Burkina Faso over a period of eight months (January–August 2013). It is based on monthly interviews with 14 women from village (10) and town (4) and on structured observations of clinical encounters in three primary healthcare facilities (two rural and one urban) (23 days). In addition, 13 health workers were interviewed and 11 focus groups with women from village (6) and town (5) were conducted (48 participants).

Guided by an analytic focus on strategies and tactics and drawing on recent discussions on the notion of ‘biomedical security’, the article explores what tactics women employ in their efforts to maximize their chances of having a positive experience with public maternal healthcare. The synthesis of the cases shows that, in a context of poverty and social insecurity, women employ five tactics: establishing good relations with health workers, being mindful of their ‘health booklet’, attending prenatal care consultations, minimizing the waiting time at the maternity unit and using traditional medicines. In this way, women strive to achieve biomedical security for themselves and their child and to preserve their social reputation. The study reveals difficulty in the collaboration and communication between health workers and women and suggests that greater attention should be paid to social relations between healthcare providers and users.

Complex and dynamic times of being chronically ill: Beyond disease trajectories of patients with ulcerative colitis

Sergei Shubin, Frances Rapport, Anne Seagrove

This article contributes to health research literature by problematizing the linear, sequential and intelligible understanding of time in the studies of illness. Drawing on the work of Martin Heidegger, it attempts to overcome the problem of considering the time of illness as either a framework controlling patients’ experiences or a mind-dependent feature of their lives. The paper offers a conceptual analysis of the stories of ulcerative colitis patients from a recent clinical trial to present temporalities of illness as both objective and subjective, relational and dynamic. We attend to a combination of temporalities related to the ambiguous unfolding of illness and patients’ relationships with such an unpredictable world of changing bodies, medical practices and temporal norms. Furthermore, our analysis reveals openness of times and considers ulcerative colitis patients as constantly evolving beings, with multiple possibilities brought about by illness. The paper highlights co-existence of times and considers patients’ lives as incorporating a multiplicity of futures, presents and pasts. It concludes with conceptual observations about the consequences of developing complex approaches to illness in health research, which can better highlight the situatedness of patients and their multi-dimensional temporal foundations.

Avoiding cancer risk information

Amber S. Emanuel, Marc T. Kiviniemi, Jennifer L. Howell, Jennifer L. Hay, Erika A. Waters, Heather Orom, James A. Shepperd

Rationale

Perceived risk for health problems such as cancer is a central construct in many models of health decision making and a target for behavior change interventions. However, some portion of the population actively avoids cancer risk information. The prevalence of, explanations for, and consequences of such avoidance are not well understood.

Objective

We examined the prevalence and demographic and psychosocial correlates of cancer risk information avoidance preference in a nationally representative sample. We also examined whether avoidance of cancer risk information corresponds with avoidance of cancer screening.

Results

Based on our representative sample, 39% of the population indicated that they agreed or strongly agreed that they would “rather not know [their] chance of getting cancer.” This preference was stronger among older participants, female participants, and participants with lower levels of education. Preferring to avoid cancer risk information was stronger among participants who agreed with the beliefs that everything causes cancer, that there’s not much one can do to prevent cancer, and that there are too many recommendations to follow. Finally, the preference to avoid cancer risk information was associated with lower levels of screening for colon cancer.

Conclusion

These findings suggest that cancer risk information avoidance is a multi-determined phenomenon that is associated with demographic characteristics and psychosocial individual differences and also relates to engagement in cancer screening.

Reaching out to Ebola victims: Coercion, persuasion or an appeal for self-sacrifice?

Philippe Calain, Marc Poncin

The 2014–2015 Ebola crisis in West Africa has highlighted the practical limits of upholding human rights and common ethical principles when applying emergency public-health measures. The role of medical teams in the implementation of quarantine and isolation has been equivocal, particularly when such measures are opposed by communities who are coerced by the temporary suspension of civil liberties. In their encounters with Ebola victims, outreach teams face moral dilemmas, where the boundaries are unclear between coercion, persuasion and appeals for self-sacrifice. For those teams, we propose a set of practical recommendations aimed at respecting the autonomy of epidemic victims and easing tensions within communities. We recognize that some of these recommendations are progressively achievable, depending on the specific stage or setting of an outbreak. Yet with the increasing availability of experimental treatments and research interventions, weighing patients’ autonomy against the common good will become an even more pressing ethical obligation.

Social network typologies and mortality risk among older people in China, India, and Latin America: A 10/66 Dementia Research Group population-based cohort study

Ziggi Ivan Santini, Ai Koyanagi, Stefanos Tyrovolas, Josep M. Haro, Katherine L. Fiori, Richard Uwakwa, Jotheeswaran A. Thiyagarajan, Martin Webber, Martin Prince, A. Matthew Prina

Background

Restricted social networks have been associated with higher mortality in several developed countries but there are no studies on this topic from developing countries. This gap exists despite potentially greater dependence on social networks for support and survival due to various barriers to health care and social protection schemes in this setting. Thus, this study aims to examine how social network type at baseline predicts all-cause mortality among older adults in six Latin American countries, China, and India.

Methods

Population-based surveys were conducted of all individuals aged 65+ years in eight countries (Cuba, Dominican Republic, Peru, Venezuela, Mexico, Puerto Rico, China, and India). Data on mortality were obtained at follow-up (mean 3.8 years after cohort inception). Follow-up data for 13,891 individuals were analysed. Social network types were assessed using Wenger’s Practitioner Assessment of Network Type (PANT). Cox proportional hazard models were constructed to estimate the impact of social network type on mortality risk in each country, adjusting for socio-demographics, receipt of pension, disability, medical conditions, and depression. Meta-analysis was performed to obtain pooled estimates.

Results

The prevalence of private network type was 64.4% in urban China and 1.6% in rural China, while the prevalence of locally integrated type was 6.6% in urban China and 86.8% in rural China. The adjusted pooled estimates across (a) all countries and (b) Latin America showed that, compared to the locally integrated social network type, the locally self-contained [(b) HR = 1.24, 95%CI 1.01–1.51], family dependent [(a) HR = 1.13, 95%CI 1.01–1.26; (b) HR = 1.13, 95%CI 1.001–1.28], and private [(a) HR = 1.36, 95%CI 1.06–1.73; (b) HR = 1.45, 95%CI 1.20–1.75] social network types were significantly associated with higher mortality risk.

Conclusion

Survival time is significantly reduced in individuals embedded in restricted social networks (i.e. locally self-contained, family dependent, and private network types). Social care interventions may be enhanced by addressing the needs of those most at risk of neglect and deteriorating health. Health policy makers in developing countries may use this information to plan efficient use of limited resources by targeting those embedded in restricted social networks.

The Poly Implant Prothèse breast prostheses scandal: Embodied risk and social suffering

Cinzia Greco

This article examines the 2010 scandal surrounding the use and subsequent recall of adulterated Poly Implant Prothèse (PIP) silicone breast prostheses in France. It uses a mixed method approach that includes 12 interviews with French PIP prosthesis recipients, analyses of medical literature, policy documents of French and EU regulatory agencies, and an online forum for PIP recipients. These data are used to explain how the definition of “acceptable risk” in the silicone implants controversy of the 1990s in the US influenced the PIP scandal later on in France. Additionally, PIP recipients had an embodied experience of risk that clashed with the definition of risk used by authorities and some surgeons. The coverage of re-implantation was also defined at different policy levels, leading to variation in patients’ suffering. The combination of fraud and lack of recognition from part of the medical system constitutes an example of social suffering for the patients involved. The PIP scandal is a useful case for analyzing the interconnection of embodied experience and professional and public policy definitions of medical risk through the concepts of moral economy and biological citizenship.

Bearing the right to healthcare, autonomy and hope

Nkululeko Nkomo

In this article, I discuss the significance of understanding within the context of the campaign for affordable and accessible HIV/AIDS treatments in South Africa, the transformational effects of the interplay between political rationality and affect for HIV-positive subjectivities. The article focuses on the policy tactics, in 2001, of the lobbying for a policy to prevent mother-to-child-transmission of HIV. A close reading of the lobby groups’ rationalization of healthcare as a fundamental human right reveals a strategic attempt to recast a sense of helplessness into self-responsibilization, which concurrently involved nourishing hope in the preferred future for women with HIV to be afforded the right to individual choice associated with self-determination. Therefore, the struggle for a policy to prevent mother-to-child-transmission of HIV – an exemplary initiative to reconstitute HIV-positive subjectivity – maneuvered within both rationalizing and emotive spaces. Ongoing engagement of the broader campaign’s contribution to redefining being HIV-positive thus also necessitates accounting for the effects of the convergence of political rationality and emotion in its tactically emancipatory project.

An internet forum analysis of stigma power perceptions among women seeking fertility treatment in the United States

Natalie Anne Jansen, Jarron M. Saint Onge

Infertility is a condition that affects nearly 30 percent of women aged 25–44 in the United States. Though past research has addressed the stigmatization of infertility, few have done so in the context of stigma management between fertile and infertile women. In order to assess evidence of felt and enacted stigma, we employed a thematic content analysis of felt and enacted stigma in an online infertility forum, Fertile Thoughts, to analyze 432 initial threads by women in various stages of the treatment-seeking process. We showed that infertile women are frequently stigmatized for their infertility or childlessness and coped through a variety of mechanisms including backstage joshing and social withdrawal. We also found that infertile women appeared to challenge and stigmatize pregnant women for perceived immoral behaviors or lower social status. We argue that while the effects of stigma power are frequently perceived and felt in relationships between infertile women and their fertile peers, the direction of the enacted stigma is related to social standing and feelings of fairness and reinforces perceived expressions of deserved motherhood in the United States.

Internalized gay ageism, mattering, and depressive symptoms among midlife and older gay-identified men

Richard G. Wight, Allen J. LeBlanc, Ilan H. Meyer, Frederick A. Harig

Objective

In this paper we introduce the construct of “internalized gay ageism,” or the sense that one feels denigrated or depreciated because of aging in the context of a gay male identity, which we identify as an unexplored aspect of sexual minority stress specific to midlife and older gay-identified men.

Methods

Using a social stress process framework, we examine the association between internalized gay ageism and depressive symptoms, and whether one’s sense of mattering mediates or moderates this association, controlling for three decades of depressive symptom histories. The sample is 312 gay-identified men (average age = 60.7 years, range = 48–78, 61% HIV-negative) participating in the Multicenter AIDS Cohort Study (MACS) since 1984/85, one of the largest and longest running studies of the natural history of HIV/AIDS in the U.S., who provided contemporary (2012/13) reports of stress experiences.

Results

We find that internalized gay ageism can reliably be measured among these men, is positively associated with depressive symptoms net of an array of other factors that may also influence symptomatology (including depressive symptom histories), and mattering partially mediates but does not moderate its effect on depressive symptoms.

Conclusion

Midlife and older gay men have traversed unparalleled historical changes across their adult lives and have paved the way for younger generations of sexual minorities to live in a time of less institutionalized discrimination. Still, they are at distinct risk for feeling socially invisible and devalued in their later years.

Mortality among immigrants in England and Wales by major causes of death, 1971–2012: A longitudinal analysis of register-based data

Matthew Wallace, Hill Kulu

Recent research has found a migrant mortality advantage among immigrants relative to the UK-born population living in England and Wales. However, while all-cause mortality is useful to show differences in mortality between immigrants and the host population, it can mask variation in mortality patterns from specific causes of death. This study analyses differences in the causes of death among immigrants living in England and Wales. We extend previous research by applying competing-risks survival analysis to study a large-scale longitudinal dataset from 1971 to 2012 to directly compare causes of death. We confirm low all-cause mortality among nearly all immigrants, except immigrants from Scotland, Northern Ireland and the Republic of Ireland (who have high mortality). In most cases, low all-cause mortality among immigrants is driven by lower mortality from chronic diseases (in nearly all cases by lower cancer mortality and in some cases by lower mortality from cardiovascular diseases (CVD)). This low all-cause mortality often coexists with low respiratory disease mortality and among non-western immigrants, coexists with high mortality from infectious diseases; however, these two causes of death contribute little to mortality among immigrants. For men, CVD is the leading cause of death (particularly among South Asians). For women, cancer is the leading cause of death (except among South Asians, for whom CVD is also the leading cause). Differences in CVD mortality over time remain constant between immigrants relative to UK-born, but immigrant cancer patterns shows signs of some convergence to the cancer mortality among the UK-born (though cancer mortality is still low among immigrants by age 80). The study provides the most up-to-date, reliable UK-based analysis of immigrant mortality.

The development and implementation of a theory-informed, integrated mother-child intervention in rural Uganda

Daisy R. Singla, Elias Kumbakumba

Rationale

A randomised cluster effectiveness trial of a parenting intervention in rural Uganda found benefits to child development among children 12–36 months, relevant parenting practices related to stimulation, hygiene and diet, and prevented the worsening of mothers’ depressive symptoms. An examination of underlying implementation processes allows researchers and program developers to determine whether the program was implemented as intended and highlight barriers and facilitators that may influence replication and scale-up.

Objectives

The objectives of this study were to describe and critically examine a) perceived barriers and facilitators related to implementation processes of intervention content, training and supervision and delivery from the perspectives of delivery agents and supervisors; b) perceived barriers and facilitators related to enactment of practices from the perspective of intervention mothers participating in the parenting program; and c) whether the program was implemented as intended.

Methods

Semi-structured interviews were conducted at midline with peer delivery agents (n = 12) and intervention mothers (n = 31) and at endline with supervisors (n = 4). Content analysis was used to analyze qualitative data in terms of barriers and facilitators of intervention content, training and supervision, delivery and enactment. Additionally, mothers’ recall and enactment of practices were coded and analyzed statistically. Monitoring of group sessions and home visits were examined to reveal whether the program was implemented as intended.

Results

Among the program’s five key messages, ‘love and respect’ targeting maternal psychological well-being was the most practiced by mothers, easiest to implement by delivery agents, and mothers reported the most internal facilitators for this message. A detailed manual and structured monitoring forms were perceived to facilitate training, intervention delivery, and supervision. Interactive and active strategies based on social-cognitive learning theory were reported as facilitators to intervention delivery. Only program attendance, but not barriers, facilitators or message recall, was significantly positively related to message enactment. Monitoring of group sessions and home visits showed that the program was largely implemented as intended.

Conclusions

This implementation assessment revealed a number of important barriers and facilitators from the perspectives of delivery agents, supervisors and program participants. The methods and results are useful to examining and informing the content, delivery, and scaling up of the current program as well as future mother-child interventions in LMIC settings.

Modeling the community-level effects of male incarceration on the sexual partnerships of men and women

Andrea K. Knittel, Rachel C. Snow, Rick L. Riolo, Derek M. Griffith, Jeffrey Morenoff

Men who have been incarcerated experience substantial changes in their sexual behavior after release from jail and prison, and high rates of incarceration may change sexual relationship patterns at a community level. Few studies, however, address how rates of incarceration affect community patterns of sexual behavior, and the implications of those patterns for HIV and STD risk. We describe a “proof of principle” computational model that tests whether rates of male incarceration could, in part, explain observed population-level differences in patterns of sexual behavior between communities with high rates of incarceration and those without. This validated agent-based model of sexual partnership among 20–25 year old heterosexual urban residents in the United States uses an algorithm that incarcerates male agents and then releases them back into the agent community. The results from these model experiments suggest that at rates of incarceration similar to those observed for urban African American men, incarceration can cause an increase in the number of partners at the community level. The results suggest that reducing incarceration and creating a more open criminal justice system that supports the maintenance of inmates’ relationships to reduce instability of partnerships for men who are incarcerated may have important sexual health and public health implications. Incarceration is one of many social forces that affect sexual decision-making, and incarceration rates may have substantial effects on community-level HIV and STD risks.

How clinical rationing works in practice: A case study of morbid obesity surgery

Amanda Owen-Smith, Jenny Donovan, Joanna Coast

Difficulties in setting healthcare priorities are encountered throughout the world. There is no agreement on the most appropriate principles or methods for healthcare rationing although there is some consensus that it should be undertaken as systematically and accountably as possible. Although some steps towards achieving accountability have been made at the macro and meso level, at the consultation level rationing remains implicit and poorly understood. Using morbid obesity surgery as a case study, we observed a series of UK National Health Service consultations where rationing was ongoing and conducted in-depth interviews with doctors and patients (2011–2014). A longitudinal approach was taken to research and in total 22 consultations were observed and 78 interviews were undertaken. Sampling was undertaken purposively and theoretically and analyses were undertaken thematically. Clinicians needed to prioritise 55 patients from 450 eligible referrals, but disagreed over the extent to which clinical and financial factors were the driving force behind decision-making. The most prominent rationing technique observed in consultations was rationing by selection, but examples of rationing by delay, by deterrence, and by deflection were also commonplace. Although all clinicians sought to avoid rationing by denial, only six of the 22 patients recruited to the research were known to have been treated at the end of the three-year period. Most clinicians sought to manage rationing implicitly, and only one explained the link between decision-making criteria and financial constraints on care availability. Although existing frameworks for categorising NHS rationing techniques were useful in identifying implicit strategies, in practice these techniques over-lapped substantially and we have proposed a simpler framework for analysing NHS rationing decisions at the consultation level, which includes just three categories – rationing by exclusion, rationing by deterrence, and rationing by delay.

An individual-based rurality measure and its health application: A case study of Latino immigrants in North Florida, USA

Liang Mao, Jeanne-Marie R. Stacciarini, Rebekah Smith, Brenda Wiens

Rurality has been frequently noted by researchers as pathways to understand human health in rural and remote areas. Current measures of rurality are mostly oriented to places, not individuals, and have not accounted for individual mobility, thus inappropriate for studying health and well-being at an individual level. This research proposed a new concept of individual-based rurality by integrating personal activity spaces. A feasible method was developed to quantify individuals’ rural experience using household travel surveys and geographic information systems (GIS). For illustration, the proposed method was applied to understand the well-being and social isolation among rural Latino immigrants, who had participated in a community-based participatory research (CBPR) study in North Florida, USA. The resulting individuals’ rurality indices were paired with their scores of well-being and social isolation to identify potential associations. The correlation analysis showed that the proposed rurality can be related to the social isolation, mental and physical well-being of individuals in different gender groups, and hence could be a suitable tool to investigate rural health issues.

“Wan Kanyakla” (We are together): Community transformations in Kenya following a social network intervention for HIV care

Charles R. Salmen, Matthew D. Hickey, Kathryn J. Fiorella, Dan Omollo, Gor Ouma, Daniel Zoughbie, Marcus R. Salmen, Richard Magerenge, Robert Tessler, Harold Campbell, Elvin Geng, Monica Gandhi, Elizabeth A. Bukusi, Craig R. Cohen

Background

In sub-Saharan Africa, failure to initiate and sustain HIV treatment contributes to significant health, psychosocial, and economic impacts that burden not only infected individuals but diverse members of their social networks. Yet, due to intense stigma, the responsibility for managing lifelong HIV treatment rests solely, and often secretly, with infected individuals. We introduce the concept of “HIV risk induction” to suggest that social networks of infected individuals share a vested interest in improving long-term engagement with HIV care, and may represent an underutilized resource for improving HIV/AIDS outcomes within high prevalence populations.

Methods

In 2012, we implemented a ‘microclinic’ intervention to promote social network engagement in HIV/AIDS care and treatment. A microclinic is a therapy management collective comprised of a small group of neighbors, relatives, and friends who are trained as a team to provide psychosocial and adherence support for HIV-infected members. Our study population included 369 patients on ART and members of their social networks on Mfangano Island, Kenya, where HIV prevalence approaches 30%. Here we report qualitative data from 18 focus group discussions conducted with microclinic participants (n = 82), community health workers (n = 40), and local program staff (n = 39).

Results

Participants reported widespread acceptability and enthusiasm for the microclinic intervention. Responses highlight four overlapping community transformations regarding HIV care and treatment, namely 1) enhanced HIV treatment literacy 2) reduction in HIV stigma, 3) improved atmosphere for HIV status disclosure and 4) improved material and psychosocial support for HIV-infected patients. Despite challenges, participants describe an emerging sense of “collective responsibility” for treatment among HIV-infected and HIV-uninfected members of social networks.

Discussion

The lived experiences and community transformations highlighted by participants enrolled in this social network intervention in Western Kenya suggest opportunities to reframe the continuum of HIV care from a secretive individual journey into a network-oriented cycle of engagement.

 

Social Studies of Science

Genomic research, publics and experts in Latin America: Nation, race and body

Peter Wade, Carlos López-Beltrán, Eduardo Restrepo, Ricardo Ventura Santos

The articles in this issue highlight contributions that studies of Latin America can make to wider debates about the effects of genomic science on public ideas about race and nation. We argue that current ideas about the power of genomics to transfigure and transform existing ways of thinking about human diversity are often overstated. If a range of social contexts are examined, the effects are uneven. Our data show that genomic knowledge can unsettle and reinforce ideas of nation and race; it can be both banal and highly politicized. In this introduction, we outline concepts of genetic knowledge in society; theories of genetics, nation and race; approaches to public understandings of science; and the Latin American contexts of transnational ideas of nation and race.

País de gordos/país de muertos: Obesity, death and nation in biomedical and forensic genetics in Mexico

Vivette García-Deister, Carlos López-Beltrán

This article provides a comparison between genomic medicine and forensic genetics in Mexico, in light of recent depictions of the nation as a ‘país de gordos’ (country of the fat) and a ‘país de muertos’ (country of the dead). We examine the continuities and ruptures in the public image of genetics in these two areas of attention, health and security, focusing especially on how the relevant publics of genetic science are assembled in each case. Publics of biomedical and forensic genetics are assembled through processes of recruitment and interpellation, in ways that modulate current theorizations of co-production. The comparison also provides a vista onto discussions regarding the involvement of genetics in regimes of governance and citizenship and about the relationship between the state and biopower in a context of perceived health crisis and war-like violence.

Genetics against race: Science, politics and affirmative action in Brazil

Michael Kent, Peter Wade

This article analyses interrelations between genetic ancestry research, political conflict and social identity. It focuses on the debate on race-based affirmative action policies, which have been implemented in Brazil since the turn of the century. Genetic evidence of high levels of admixture in the Brazilian population has become a key element of arguments that question the validity of the category of race for the development of public policies. In response, members of Brazil’s black movement have dismissed the relevance of genetics by arguing, first, that in Brazil race functions as a social – rather than a biological – category, and, second, that racial classification and discrimination in this country are based on appearance, rather than on genotype. This article highlights the importance of power relations and political interests in shaping public engagements with genetic research and their social consequences.

Building the genomic nation: ‘Homo Brasilis’ and the ‘Genoma Mexicano’ in comparative cultural perspective

Michael Kent, Vivette García-Deister, Carlos López-Beltrán, Ricardo Ventura Santos,Ernesto Schwartz-Marín, Peter Wade

This article explores the relationship between genetic research, nationalism and the construction of collective social identities in Latin America. It makes a comparative analysis of two research projects – the ‘Genoma Mexicano’ and the ‘Homo Brasilis’ – both of which sought to establish national and genetic profiles. Both have reproduced and strengthened the idea of their respective nations of focus, incorporating biological elements into debates on social identities. Also, both have placed the unifying figure of the mestizo/mestiço at the heart of national identity constructions, and in so doing have displaced alternative identity categories, such as those based on race. However, having been developed in different national contexts, these projects have had distinct scientific and social trajectories: in Mexico, the genomic mestizo is mobilized mainly in relation to health, while in Brazil the key arena is that of race. We show the importance of the nation as a frame for mobilizing genetic data in public policy debates, and demonstrate how race comes in and out of focus in different Latin American national contexts of genomic research, while never completely disappearing.

Colombian forensic genetics as a form of public science: The role of race, nation and common sense in the stabilization of DNA populations

Ernesto Schwartz-Marín, Peter Wade, Arely Cruz-Santiago, Roosbelinda Cárdenas

This article examines the role that vernacular notions of racialized-regional difference play in the constitution and stabilization of DNA populations in Colombian forensic science, in what we frame as a process of public science. In public science, the imaginations of the scientific world and common-sense public knowledge are integral to the production and circulation of science itself. We explore the origins and circulation of a scientific object – ‘La Tabla’, published in Paredes et al. and used in genetic forensic identification procedures – among genetic research institutes, forensic genetics laboratories and courtrooms in Bogotá. We unveil the double life of this central object of forensic genetics. On the one hand, La Tabla enjoys an indisputable public place in the processing of forensic genetic evidence in Colombia (paternity cases, identification of bodies, etc.). On the other hand, the relations it establishes between ‘race’, geography and genetics are questioned among population geneticists in Colombia. Although forensic technicians are aware of the disputes among population geneticists, they use and endorse the relations established between genetics, ‘race’ and geography because these fit with common-sense notions of visible bodily difference and the regionalization of race in the Colombian nation.

Explaining the visible and the invisible: Public knowledge of genetics, ancestry, physical appearance and race in Colombia

Ernesto Schwartz-Marín, Peter Wade

Using data from focus groups conducted in Colombia, we explore how educated lay audiences faced with scenarios about ancestry and genetics draw on widespread and dominant notions of nation, race and belonging in Colombia to ascribe ancestry to collectivities and to themselves as individuals. People from a life sciences background tend to deploy idioms of race and genetics more readily than people from a humanities and race-critical background. When they considered individuals, people tempered or domesticated the more mechanistic explanations about racialized physical appearance, ancestry and genetics that were apparent at the collective level. Ideas of the latency and manifestation of invisible traits were an aspect of this domestication. People ceded ultimate authority to genetic science, but deployed it to work alongside what they already knew. Notions of genetic essentialism co-exist with the strategic use of genetic ancestry in ways that both fix and unfix race. Our data indicate the importance of attending to the different epistemological stances through which people define authoritative knowledge and to the importance of distinguishing the scale of resolution at which the question of diversity is being posed.

 

Subjectivity

Affect, memory and the transmission of trauma

Nathan M To, Elena Trivell

As it so happens with many promising projects, this special issue began long before we expected it to. Some serendipitous meetings in the early years of our graduate research sparked the mutual intrigue in our respective projects.

Affective geographies: Intergenerational hauntings, bodily affectivity and multiracial subjectivities

Ana Dragojlovic

The ‘incorporated, body memory’ of Indisch people in the diaspora grapples with memories of places left by their ancestors in the colonial Dutch East Indies in the aftermath of two wars, imprisonment and torture. I explore how Indisch travellers who do not purposely invest themselves in memory and genealogy work in their travels nevertheless become overwhelmed by the atmosphere of certain foreign places, and thus become ‘connected’ to the sense of loss that permeates their family’s history. I argue that affectivity needs to be discussed in the context of specific historical contingencies and that more attention needs to be paid to how affectivity is qualified and given meaning. I suggest we need to consider how affectivity operates through and across the binary oppositions of cognitive and affective, and intentional and non-intentional.

Haunting memories of war in Chinese cinema and diaspora: Visions of national trauma, power and autoethnographic collage

Nathan M To

The transgenerational ghosts of trauma from war, death and injustice within Chinese twentieth century history are carried through the remembrances and silences of mediated, diasporic visions of memory. These ghosts are visible through Chinese cinema at the intersection of modern China’s national interests, issues of power and the transnational distribution/production of official memory. These relations also suggest an insistence to produce particular national, unified identifications within the collective imaginations of spectators across generations in the Chinese diaspora. While some national wounds are ‘chosen’ and remembered (for example, Western colonialism, Imperial Japanese invasion), other collective traumas continue to be disavowed through cinematic memory productions. In response to these issues of historical rewriting and memory production, I propose alternate ways of seeing cinema through a critical autoethnography that juxtaposes other mediations of memory. I explore how this approach to cinema spectatorship enables diasporic subjects to interrogate how affective trauma transmits unconsciously across generations.

Affect, memory and the blue jumper: Queer languages of loss in Argentina’s aftermath of violence

Cecilia Sosa

From 1976 to 1983, a devastating military regime orchestrated the vanishing of 30 000 lives in Argentina, the infamous ‘disappeared’. For more than three decades, the families of the victims commanded the process of national mourning. In this essay, I suggest that the experience of loss has circulated from direct victims to ever-expanding audiences. To articulate this transition, I draw upon recent cultural productions and personal biographies touched by trauma. The story of a particular blue jumper touches upon the theatrical piece Mi vida después (2009), the film Los rubios (2003) and the TV show 23 Pares (2012). This body of work speaks about unconventional forms of care, which have emerged out of grief. It also traces the emergence of a new language to deal with loss. Ultimately, I suggest that disparate forms of ‘affective reparation’ have made room for a queer system of kinship beyond bloodline ties.

Producing memory: Narratives of suffering in the asylum experience

Virginia Signorini

When someone applies for asylum in Italy, he or she is supposed to compose a personal story – referred to literally as his or her ‘memory’ [memoria] – and to present it in front of a commission. There is a coralwork on the assembly of someone’s memory: memories are recounted orally, translated, reported, reconstructed and evaluated. This article focuses on the duality of memory production within the asylum procedure, analyzing the work of legal operators in relation to the act of remembering traumatic events. The former is based on the legal procedures for the recognition of international protection, while the latter is deeply related to the asylum seeker who is required to remember, demonstrate and perform memories, especially traumatic ones. On the one hand, memory represents the key to accessing social rights and thereby promotes the practice of citizenship. On the other hand, memory can be part of a victimisation process that reinforces the refugee label.

Psychosomatic feelings as memory practices

Elena Trivelli

I here explore the manifestation of problematic memories on a psychosomatic level, with a focus on the work of psychiatrist Franco Basaglia (1924–1980) in the Italian city of Gorizia. As Basaglia transformed the local asylum into a Therapeutic Community during the 1960s, the city became a nationally acclaimed pilot for alternative psychiatry. After he left in 1968, Gorizia’s characterisation in the media shifted from being a radical experiment to a failed revolution, and the city has since held an ambiguous relationship with this heritage. Using the data gathered through an ethnography conducted between 2011 and 2012, I suggest that the controversial vicissitudes of ‘the Basaglia experience’ and the attempts to erase their emotional weight in Gorizia have left traces that I frame as embodied remembering practices. In discussing psychosomatic expressions of social discomfort, I formulate a body that is both somatic and psychological, contributing to a field at the intersection between psychoanalysis, trauma and affect studies.

Relationality in a time of surveillance: Narcissism, melancholia, paranoia

Stephen Frosh

This article explores apparent shifts in the cultural use of psychoanalytic concepts, from narcissism, through melancholia, to paranoia. It tries to track these shifts, very loosely, in relation to changes in sociocultural and political atmospheres, noting that none of the shifts are complete, that each one leaves previous states of being and of mind at least partially in place. Narcissism was perhaps the term of choice for examining the problem of forging relationships that feel meaningful in a context of rapid change and neo-liberal expansion; then melancholia was (and is) drawn on to conceptualise the challenge of confronting loss and colonial ‘theft’; and now the annexation of the polity – and of everyday life – by massively insidious surveillance produces a culture and subjecthood that is fundamentally, and understandably, paranoid.


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