The Timing and Experience of Menopause among British Pakistani Women in Bradford and Leeds, West Yorkshire, UK

Previous studies have shown considerable differences at both the population and individual levels in the timing of menopause and the experience of physical and emotional changes related to menopause (generally called symptoms). Attempts to understand this variation have not found a consistent pattern, suggesting that the existing approaches to the study of menopause may have failed to capture some of the complexity of the phenomenon. Previous research on British Pakistanis has not included in-depth study of menopause. The present study has sought to demonstrate that a biosocial research design can improve our understanding of the menopause transition both among British Pakistanis and more generally. This study used a range of methods including semi-structured questionnaire-based interviews and anthropometrics (n=257), life history interviews (n=19), and daily participant observation among middle-aged British Pakistani women in the Leeds/Bradford area of West Yorkshire. Statistical procedures were used on the quantitative data using SPSS 15; qualitative data were analysed using a thematic coding system and NVivo software. This study found that British Pakistani women of a higher occupational social class were more likely to experience hot flushes than women from lower social classes and women who perceive themselves to be of higher status were more likely to have an earlier menopause than their lower status counterparts. Women from the Choudhary Jatt biradari (a caste-related kinship group) were more likely to have a later menopause and were less likely to experience hot flushes than women from other biradaris. Levels of reported anxiety and acculturation were both positively associated with hot flush severity. Women reported a wide range of changes due to menopause and attributed changes to menopause that previous researchers considered to be unrelated to menopause. Attribution of symptoms to menopause was associated with menopausal status, age, and migration status. Women interpreted some items from a standard checklist in ways other than intended by the checklist‘s developers, based on local ideas about menopause. British Pakistani women‘s understandings and perceptions of menopause are intimately linked with their understandings of Islam, sexuality, menstruation, and ageing, as well as their ethnic identity and notions of purity and modesty. Social issues like acculturation, social support, kinship networks, class, and the history of tensions between Pakistanis and the wider society appear to be very important to consider in understanding menopause among British Pakistani women. Social issues such as these may play a role in influencing both the timing and the experience of menopause among women in other groups and thus should be considered in future studies

Determinants of Age at Menarche in the Newcastle Thousand Families Study

Early life determinants of age at menarche were investigated for female participants in the longitudinal Thousand Families Study based in Newcastle upon Tyne. Age at menarche was collected retrospectively from 276 participants at the age 50 follow-up in 1997. Birth weight, length of gestation, height, weight, duration of breast feeding, social class, periods of infection, and quality of housing conditions in childhood were collected prospectively. Ordinal logistic regression was used to test univariate and multivariable associations of fetal and childhood data with menarcheal age group membership. Separation into 3 menarcheal age groups was made with respect to distance in standard deviations from the sample mean: early (μ->1 SD), middle (μ±1SD). Regression models were also used to test univariate and multivariable associations between fetal and childhood data and age at menarche as a continuous variable. Two main independent associations were observed: girls who experienced a shorter gestation and girls who were heavier at age 9 had earlier menarche. Birth weight adjusted 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 hypothesis that fetal conditions are associated with the timing of menarche and the hypothesis that greater childhood tissue growth is associated with earlier menarche. It is suggested that future work should focus on illuminating the mechanisms underlying these statistical relationships

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

Publisher Copyright: © 2021 The Authors. Bioethics published by John Wiley & Sons Ltd.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.Peer reviewe

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

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

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

Abstract 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

The interview as narrative ethnography : seeking and shaping connections in qualitative research.

Acts of counter-subjectification in qualitative research are always present but are often submerged in accounts that seek to locate the power of subjectification entirely with the researcher. This is particularly so when talking to people about sensitive issues. Based on an interview-based study of infertility and reproductive disruption among British Pakistanis in Northeast England, we explore how we, as researchers, sought and were drawn into various kinds of connections with the study participants; connections that were actively and performatively constructed through time. The three of us that conducted interviews are all female academics with Ph.Ds in anthropology, but thereafter our backgrounds, life stories and experiences diverge in ways that intersected with those of our informants in complex and shifting ways. We describe how these processes shaped the production of narrative accounts and consider some of the associated analytical and ethical implications

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

Funder: Franca FundFunder: Canada Research Chair in Law and MedicineFunder: Canada Institute of Health ResearchFunder: Genome QuebecFunder: Genome CanadaFunder: Can-SHARE ConnectFunder: CIHRDespite 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