On the Shoulders of Giants Or the Back of a Mule: Awareness of Multiplicity In Citational Politics.

Citational practices reflect values and valuation in academia. Far from being merely consciously or unconsciously political, they reflect academic "upbringing" in complex ways, and, although one may be unhappy at how they were raised, it still may not be clear how to live better. In this article, I highlight aspects of my upbringing in anthropology, noting how I was instructed in citational practice by senior anthropologists from biological and social anthropology. In exploring my journey from naivete to an understanding of citational politics, I describe two figures, the giant and the mule. These figures illustrate the impacts of the practices I was taught. One comes to us from the history of great white men of Europe, the other from Black feminist anthropological fiction of the United States.

Reproductive justice for the haunted Nordic welfare state: Race, racism, and queer bioethics in Finland.

The Nordic welfare state aims to offer universal healthcare and achieve good health, bar none. We discuss past and present moral blind spots in welfare state bioethics through reproductive justice and queer bioethics, particularly focusing on race and racism, based on ethnographic data from Finland. Globally portrayed as aspirational and mostly uninterrogated, it is crucial to have a thorough bioethical evaluation of a Nordic model informed by Black and queer perspectives. We have come to conceptualize the Finnish welfare state as haunted. We fear that the seemingly non-racial racial hygiene continues to haunt bioethics of the welfare state as structural racism. A key cause for this concern is the lack of racial awareness in public politics and the reluctance in discussing racism due to the national agenda of color-blindness. This crucially compounds to our findings that medical professionals prefer to think they operate on "purely medical" reasoning as opposed to nuanced ethical contemplation, the latter associated with "social issues" that allegedly cannot be resolved and are outside medical interest. We discuss how the bioethical aftermath of eugenics remains unresolved. Racist, classist, sexist, ableist, and cis- and heteronormative stratification of reproduction requires a nuanced moral compass for Nordic welfare state bioethics, not "strictly medical practice." We suggest queer bioethics as a moral theory for recalibrating this compass, joining forces with other justice movements to tackle racism in healthcare and further to interrogate racism, sexism, ableism and cis- and heteronormativity in bioethics.

Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders' perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants.

What does engagement mean to participants in longitudinal cohort studies? A qualitative study.

BACKGROUND: Engagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an ethical imperative. This study sought to explore the participants' experiences and thoughts of their engagement with their birth cohort study. METHODS: Participants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique. RESULTS: Participants' experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in 'good' ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study. CONCLUSION: The experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt and other times more nuanced. We further provide empirical evidence of participants' expectation for a reciprocal interaction with their cohort study while highlighting the trust that such an interaction fosters. Our study therefore provides key insights for other cohort studies on what participants value in their interactions with their cohort studies.

Beyond trust: Amplifying unheard voices on concerns about harm resulting from health data-sharing.

Background: The point of care in many health systems is increasingly a point of health data generation, data which may be shared and used in a variety of ways by a range of different actors. Aim: We set out to gather data about the perspectives on health data-sharing of people living in North East England who have been underrepresented within other public engagement activities and who are marginalized in society. Methods: Multi-site ethnographic fieldwork was carried out in the Teesside region of England over a 6-month period in 2019 as part of a large-scale health data innovation program called Connected Health Cities. Organizations working with marginalized groups were contacted to recruit staff, volunteers, and beneficiaries for participation in qualitative research. The data gathered were analyzed thematically and vignettes constructed to illustrate findings. Results: Previous encounters with health and social care professionals and the broader socio-political contexts of people's lives shape the perspectives of people from marginalized groups about sharing of data from their health records. While many would welcome improved care, the risks to people with socially produced vulnerabilities must be appreciated by those advocating systems that share data for personalized medicine or other forms of data-driven care. Conclusion: Forms of innovation in medicine which rely on greater data-sharing may present risks to groups and individuals with existing vulnerabilities, and advocates of these innovations should address the lack of trustworthiness of those receiving data before asking that people trust new systems to provide health benefits.

Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation.

Genomic science is increasingly central to the provision of health care. Producing and applying robust genomics knowledge is a complex endeavour in which no single individual, profession, discipline or community holds all the answers.  Engagement and involvement of diverse stakeholders can support alignment of societal and scientific interests, understandings and perspectives and promises better science and fairer outcomes. In this context we argue for F.A.I.R.E.R. data and data use that is Findable, Accessible, Interoperable, Reproducible, Equitable and Responsible. Yet there is a paucity of international guidance on how to engage publics, patients and participants in genomics. To support meaningful and effective engagement and involvement we developed an Engagement Framework for involving and engaging participants, patients and publics in genomics research and health implementation. The Engagement Framework is intended to support all those working in genomics research, medicine, and healthcare to deliberatively consider approaches to participant, patient and public engagement and involvement in their work. Through a series of questions, the Engagement Framework prompts new ways of thinking about the aims and purposes of engagement, and support reflection on the strengths, limitations, likely outcomes and impacts of choosing different approaches to engagement. To guide genomics activities, we describe four themes and associated questions for deliberative reflection: (i) fairness; (ii) context; (iii) heterogeneity, and (iv) recognising tensions and conflict. The four key components in the Engagement provide a framework to assist those involved in genomics to reflect on decisions they make for their initiatives, including the strategies selected, the participant, patient and public stakeholders engaged, and the anticipated goals. The Engagement Framework is one step in an actively evolving process of building genomics research and implementation cultures which foster responsible leadership and are attentive to objectives which increase equality, diversity and inclusion in participation and outcomes.

Association of HIV status with sexual function in women aged 45-60 in England: results from two national surveys.

Increasing numbers of women living with HIV are reaching their midlife. We explore the association of HIV status with sexual function (SF) in women aged 45-60 using two national cross-sectional surveys: the third British National Survey of Sexual Attitudes and Lifestyles ("Natsal-3") and "PRIME", a survey of women living with HIV attending HIV clinics across England. Both studies asked the same questions about SF that take account not only sexual difficulties but also the relationship context and overall level of satisfaction, which collectively allowed an overall SF score to be derived. We undertook analyses of sexually-active women aged 45-60 from Natsal-3 (N = 1228, presumed HIV-negative given the low estimated prevalence of HIV in Britain) and PRIME (N = 386 women living with HIV). Women living with HIV were compared to Natsal-3 participants using multivariable logistic regression (adjusting for key confounders identified a priori: ethnicity, ongoing relationship status, depression and number of chronic conditions) and propensity scoring. Relative to Natsal-3 participants, women living with HIV were more likely to: have low overall SF (adjusted odds ratio (AOR) 3.75 [2.15-6.56]), report ≥1 sexual problem(s) lasting ≥3 months (AOR 2.44 [1.49-4.00]), and report almost all 8 sexual problems asked about (AORs all ≥2.30). The association between HIV status and low SF remained statistically significant when using propensity scoring (AOR 2.43 [1.68-3.51]). Among women living with HIV (only), low SF was more common in those who were postmenopausal vs. Premenopausal (55.6% vs. 40.4%). This study suggests a negative association between HIV status and sexual function in women aged 45-60. We recommend routine assessment of SF in women living with HIV.

Direct-to-Consumer Genetic Testing's Red Herring: "Genetic Ancestry" and Personalized Medicine.

The growth in the direct-to-consumer genetic testing industry poses a number of challenges for healthcare practice, among a number of other areas of concern. Several companies providing this service send their customers reports including information variously referred to as genetic ethnicity, genetic heritage, biogeographic ancestry, and genetic ancestry. In this article, we argue that such information should not be used in healthcare consultations or to assess health risks. Far from representing a move toward personalized medicine, use of this information poses risks both to patients as individuals and to racialized ethnic groups because of the way it misrepresents human genetic diversity.

Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure.

BACKGROUND: Genomic and biosocial research data about individuals is rapidly proliferating, bringing the potential for novel opportunities for data integration and use. The scale, pace and novelty of these applications raise a number of urgent sociotechnical, ethical and legal questions, including optimal methods of data storage, management and access. Although the open science movement advocates unfettered access to research data, many of the UK's longitudinal cohort studies operate systems of managed data access, in which access is governed by legal and ethical agreements between stewards of research datasets and researchers wishing to make use of them. Amongst other things, these agreements aim to respect the reasonable expectations of the research participants who provided data and samples, as expressed in the consent process. Arguably, responsible data management and governance of data and sample use are foundational to the consent process in longitudinal studies and are an important source of trustworthiness in the eyes of those who contribute data to genomic and biosocial research. METHODS: This paper presents an ethnographic case study exploring the foundational principles of a governance infrastructure for Managing Ethico-social, Technical and Administrative issues in Data ACcess (METADAC), which are operationalised through a committee known as the METADAC Access Committee. METADAC governs access to phenotype, genotype and 'omic' data and samples from five UK longitudinal studies. FINDINGS: Using the example of METADAC, we argue that three key structural features are foundational for practising responsible data sharing: independence and transparency; interdisciplinarity; and participant-centric decision-making. We observe that the international research community is proactively working towards optimising the use of research data, integrating/linking these data with routine data generated by health and social care services and other administrative data services to improve the analysis, interpretation and utility of these data. The governance of these new complex data assemblages will require a range of expertise from across a number of domains and disciplines, including that of study participants. Human-mediated decision-making bodies will be central to ensuring achievable, reasoned and responsible decisions about the use of these data; the METADAC model described in this paper provides an example of how this could be realised.

British Pakistani Muslim Masculinity, (In)fertility, and the Clinical Encounter.

The experiences of men facing fertility disruptions are understudied. For British Pakistanis, the impact of infertility is heightened for women because of normative pressures to bear children. But what of men? I present data from in-depth interviews in North East England with infertile British Pakistani Muslims and relevant health professionals. British Pakistani men's level of participation in clinical encounters and responses to diagnoses of male factor infertility must be understood in the context of kinship, the construction of Pakistani ethnicity in the UK, and the subordinated forms of masculinity which accompany this identity.

The ECOUTER methodology for stakeholder engagement in translational research.

BACKGROUND: Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes (as a patient or member of the public). Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others (the many 'publics' of engagement) brings them closer to the research but also brings the research closer to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users. METHODS: In practice, engagement faces numerous challenges and is often time-consuming, expensive and 'thorny' work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER (Employing COnceptUal schema for policy and Translation Engagement in Research) methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, "How could it be otherwise?" ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of 'keeping open' the possible considerations that might emerge and including reflexive use of qualitative analytic methods. RESULTS: This paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to 'open up' engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: (1) engagement and knowledge exchange; (2) analysis of mindmap contributions; (3) development of a conceptual schema (i.e. a map of concepts and their relationship); and (4) feedback, refinement and development of recommendations. CONCLUSION: ECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it.

Menopausal symptoms among British Pakistani women: a critique of the standard checklist approach.

OBJECTIVE: This study aims to identify problems with the standard menopause symptom checklist method previously used to study variations in menopause symptoms and to explore data collected using an alternative approach. METHODS: As part of a biosocial study of menopause, 257 British Pakistani women aged 39 to 61 years and living in West Yorkshire, UK, were interviewed. Participants reported and rated any menopause-associated changes (positive or negative) they had experienced. Participants also reported whether they associated with menopause each of the 34 symptoms on a standard checklist. Responses were analyzed using factor analysis, and factor scores from five factors were used to assess predictors of the attribution of symptoms to menopause. RESULTS: Women reported a wide range of symptoms, most of which are not on symptom checklists. Attribution of symptoms to menopause was associated with menopause status, age, and migration status. Women's beliefs about which experiences were attributable to menopause did not correspond to those of the checklist developers. Women interpreted some items on the standard checklist in ways other than originally intended based on local ideas; however, because of the use of a more open approach, this produced useful data. CONCLUSIONS: Symptom checklists have serious limitations as a tool for understanding symptom experience, and prior justifications for their use leave much to be desired. The use of a more open approach generates useful data; moreover, research participants' understanding of changes attributable to menopause may accurately reflect biological changes and may have a relationship with population-specific disease risk.

Health impacts of pedestrian head-loading: a review of the evidence with particular reference to women and children in sub-Saharan Africa.

Across sub-Saharan Africa, women and children play major roles as pedestrian load-transporters, in the widespread absence of basic sanitation services, electricity and affordable/reliable motorised transport. The majority of loads, including water and firewood for domestic purposes, are carried on the head. Load-carrying has implications not only for school attendance and performance, women's time budgets and gender relations, but arguably also for health and well-being. We report findings from a comprehensive review of relevant literature, undertaken June-September 2012, focussing particularly on biomechanics, maternal health, and the psycho-social impacts of load-carrying; we also draw from our own research. Key knowledge gaps and areas for future research are highlighted.

'Everybody is moving on': infertility, relationality and the aesthetics of family among British-Pakistani Muslims.

It is now widely recognised that experiences of infertility are socially and culturally contingent. Drawing on reproductive narratives of 108 British-Pakistani Muslims living in Northeast England (collected from 2007 to 2010), we show that subjective experiences of infertility in this population can take many forms, from 'straightforward' childlessness to concerns about inability to fulfil a range of reproductive expectations, desires and obligations, regarding timing, gender balance and number of offspring. Extended family relations are pivotal in the processes through which reproduction (or lack thereof) becomes defined as problematic. Changing family aesthetics can thus shape individuals' experiences of infertility in important ways. A growing emphasis on conjugal relationships for some couples offers a greater range of reproductive possibilities (enabling, for example, a period of voluntary childlessness). For others, increasing nuclearisation of family life reduces the possibilities for extended families to 'plug the gap' by providing proxy-children and a normalised social role for infertile couples. Moreover, such social roles may be time-limited, creating serious challenges for the long-term childless, who find themselves caught 'betwixt and between' two disparate sets of values.

Obesity, hypertension, and migration: a meta-analysis of populations of the South Asian diaspora.

The effects of migration on human health have been a topic of interest for demographers and human biologists. Even if migrants to a new region achieve a higher standard of living in their new place of residence, their improved living conditions may not be associated with better health. Part of the difficulty of understanding the health consequences of migration is the complications in trying to control for variables that may affect health, such as gender, age, and urban or rural environment of migrants and nonmigrants. In this paper we report results of a meta-analysis of the body mass index (BMI) and blood pressure (BP) of people of South Asian descent, by comparing nonmigrants who inhabit the subcontinent, with migrants who moved to various places around the globe. Our results indicate that BMI almost always increases to a significant level upon migration and that an increase in BMI is most pronounced in female migrants. Our results also show that BP does not always increase in migrant communities and that it is actually lower in some migrant samples than it is in comparable nonmigrant groups. Therefore, our results show that BP and the BMI do not behave in the same manner following a migration event. We propose that the BMI changes experienced by migrants are likely to reflect different activity levels and diet in the new homeland. However, the BP changes experienced by migrants are likely to reflect stress broadly defined. Such stress may be increased or decreased, depending on the specific migration experience. We propose that the BMI and BP measure two different dimensions of the migration experience.

GPs' explanatory models for irritable bowel syndrome: a mismatch with patient models?

BACKGROUND: Inconsistencies in doctors' views about causes and treatment of irritable bowel syndrome (IBS) lead to frustration for doctors and in doctor-patient interactions. Diagnosis by GPs does not correspond well to established diagnostic criteria. OBJECTIVE: To understand GPs' explanatory models (EMs) and management strategies for IBS. METHODS: Qualitative, semi-structured interviews with 30 GPs (15 from the UK and 15 from The Netherlands). RESULTS: Diagnosing IBS in primary care is a complex process, involving symptoms, tests, history and risk calculation. GPs were uncertain about the aetiology of IBS, but often viewed it as a consequence of disordered bowel activity in response to stress, which was viewed as a function of people's responses to their environment. GPs tend to diagnose IBS by exclusion, rather than with formal diagnostic criteria. They endeavoured to present the IBS diagnosis to their patients in a way that they would accept, fearing that many would not be satisfied with a diagnosis that had no apparent physical cause. GPs focused on managing symptoms and reassuring patients. Many GPs felt that patients needed to take the responsibility for managing their IBS and for minimizing its impact on their daily lives. However, the GPs had limited awareness of the extent to which IBS affected their patients' daily lives. CONCLUSIONS: GPs' diagnostic procedures and EMs for IBS are at odds with patient expectations and current guidelines. Shared discussion of what patients believe to be triggers for symptoms, ways of coping with symptoms and the role of medication may be helpful.

Patients' explanatory models for irritable bowel syndrome: symptoms and treatment more important than explaining aetiology.

BACKGROUND: Irritable bowel syndrome (IBS) is a common condition associated with no certain organic cause, though diet and stress are widely implicated. The condition is frustrating for both sufferers and doctors, and there are problems in diagnosing and treating the condition. Eliciting explanatory models (EMs) is a useful tool for understanding how individuals relate to their illnesses and their expectations for treatment, particularly for illnesses with uncertain aetiology like IBS. OBJECTIVES: To understand the EMs, experiences and expectations for management of patients with IBS. METHODS: Qualitative, semi-structured interviews were conducted with 51 primary care patients (31 in the UK, 20 in The Netherlands) meeting the Rome II diagnostic criteria for IBS. RESULTS: Although IBS often had a significant dampening effect on daily life, IBS patients made great efforts not to allow the condition to take over their lives. Triggers of symptoms were more important to patients than understanding the underlying aetiology of IBS. Diet and stress were both recognized as important triggers, but views about which foods were problematic and the extent to which stress was modifiable were inconsistent. Diagnosis and treatment were often a confusing and frustrating process, and patients often expected more diagnostic tests than they were offered before receiving a diagnosis of IBS. However, the often poor outcome of medical interventions does not, in general, appear to have a negative impact on the patient-doctor relationship. CONCLUSIONS: Clinicians should be aware of the extensive impact of IBS on sufferers' daily life and the frustration that results from repeatedly trying treatments with little effect. Clearly explaining the guidelines for diagnosing IBS and the range of treatment options may help patients to make sense of the diagnostic and treatment processes. The personal EM should be addressed during the consultation with the IBS patient, ensuring that any successive medical interventions match with the patients' disease perception.

Predictors of age at menarche in the newcastle thousand families study.

Several studies have found relationships between early life factors (birth weight, length of gestation, height, weight, duration of breast-feeding, maternal age, social class, periods of infection, presence of adverse life events, and quality of housing conditions in childhood) and age at menarche but none has considered all of these factors in the same study. The follow-up study of the Newcastle Thousand Families birth cohort, established in 1947, provided age at menarche data collected retrospectively at age 50 from 276 women who returned self-completion questionnaires in 1997. Three main independent associations were observed: girls who experienced a shorter gestation, girls whose mothers were younger when they were born, and girls who were heavier at age 9 had earlier menarche. Birth weight, standardized for gestational age, was found to have different relationships with age at menarche depending upon how heavy or light a girl was at age 9. The results of this study support the hypotheses that conditions in fetal and early life are associated with the timing of menarche and that greater childhood growth is associated with earlier menarche. It is suggested that future work should focus on illuminating the mechanisms underlying these statistical relationships.

Indentured migration and differential gender gene flow: the origin and evolution of the East-Indian community of Limón, Costa Rica.

After the emancipation of African slaves in the Caribbean, the labor void left by out-migrating former slaves was filled by in-migrating indentured servants from prepartition India and China. In some areas of the Caribbean such as Trinidad, Suriname, and Guyana, the East-Indian migrants formed large communities. In this article, we report a study based on mtDNA and Y-chromosomal markers of a small East-Indian community from Limón, Costa Rica. The purpose of the project is to determine the place of origin in the Indian subcontinent of the ancestors of our group and the contributions to its gene pool through gene flow by members of other ethnic groups. Both Y-chromosome and mtDNA suggest that the Indo-Costa Ricans descend from migrants primarily from Central India. While both paternal and maternal markers indicate that this group is overwhelmingly of Indian origin, they also indicate that males and females of African, European, and Amerindian origin contributed to it differently. We discuss our results in the historical context of the virtual extinction of Amerindian Caribbean groups, the forced migration of African slaves to the Caribbean, and the gene flow between Amerindians, Europeans, East-Indians, and Africans that eventually produced the Caribbean's currently diverse gene pool.