131 research outputs found
Situational ethics in a feminist ethnography on commercial surrogacy in Russia: Negotiating access and authority when recruiting participants through institutional gatekeepers
In this article, I discuss methodological and ethical dilemmas that arose when I was recruiting participants with the help of medical and institutional gatekeepers during my ethnographic fieldwork on commercial surrogacy in St Petersburg, Russia. Using four selected case studies, I argue for the use of situational ethics. Ethics that are approved by institutional advisory boards prior to data collection are important to ensure that researchers do their best to identify potential ethical issues and offer deontological safeguards. However, as empirical researchers we are familiar with the unanticipated that is bound to happen once we commence data collection. I argue that in such cases, when the proposed and approved ethical conduct is no longer appropriate and researchers must make new ethical choices, situational ethics that take the immediate context into consideration are crucial. I further argue that situational ethics must not only be an extension of procedural ethics when the latter are no longer suited in situ, but an alternative option to procedural ethics from the beginning in order to make the research more ethical, empowering, and transformative of existing disadvantaging power relations. With this article, I encourage fellow (feminist) ethnographers to think outside the tick boxes for institutional advisory boards and contribute to the growing body of literature that argues in favour of situational ethics
Moral frameworks of commercial surrogacy within the US, India, and Russia
In this paper, we draw on three ethnographic studies of surrogacy we carried out separately in different contexts: the western US state of California, the south Indian state of Karnataka, and the western Russian metropolis of St Petersburg. In our interviews with surrogate mothers, intended parents, and surrogacy professionals, we traced the meanings and ideologies through which they understood the clinical labour of surrogacy. We found that in the US, interviewed surrogates, intended parents and professionals understood surrogacy as an exchange of both gifts and commodities, where gift-giving, reciprocity, and relatedness between surrogates and intended parents were the major tropes. In India, differing narratives ofsurrogacy were offered by its different parties: whilst professionals and intended parents framed it as a winwin
exchange with an emphasis on the economic side of it, the interviewed surrogate mothers talked about surrogacy as creative labour of giving life. In Russia, approaches to surrogacy among the interviewed surrogate mothers, professionals and intended parents overlapped in framing it as work and a businesslike commodity exchange. We suggest these three different ways of ethical reasoning about the clinical labour of
surrogacy, including justifications of women’s incorporation into this labour, were situated in local moral frameworks. We name them repro-regional moral frameworks, inspired by earlier work on moral frameworks as well as on reproductive nationalisms and transnational reproduction. Building on these findings, we argue that any international or global regulation of surrogacy, or indeed any moral stance on it, needs to take these local differences into account.Funding was provided by the British Wellcome Trust (Grant no. 100606, and Grant no. 209829/Z/17/Z); the Marie Curie International Outgoing Fellowship – Seventh Framework Programme of the European Union (FP7-PEOPLE-2013-IOF, Grant Agreement no. 629341, ‘SurrogARTs’), as well as and Spanish Ministry of Economy, Industry and Competitiveness / Feder / EU (grant no. CSO2015- 64551-C3-1-R). Funding was also provided by the De Montfort University, UK, via the PhD Studentship program 2013-17
Reproductive Migrations: Surrogacy workers and stratified reproduction in St Petersburg
Surrogacy is an arrangement whereby a woman conceives in order to give birth to child or children for another individual or couple to raise. This thesis explores how commercial gestational surrogacy is culturally framed and socially organised in Russia and investigates the roles of the key actors. In particular it explores the experiences of surrogacy workers, including those who migrate or commute long distances within and to Russia for surrogacy work and the significance of their origin, citizenship, ethnicity and religion in shaping their experience. Ethnographic fieldwork was carried out in St Petersburg between August 2014 and May 2015 and involved semi-structured interviews, (participant) observations, informal conversations and ethnographic fieldnotes with 33 surrogacy workers, 7 client parents, 15 agency staff and 11 medical staff in medical and surrogacy agency facilities. Data were analysed using inductive ethnographic principles. A reflexive account, which includes a consideration of the utility of making one’s own emotional responses a research tool, is also included. Drawing on and expanding on Colen’s (1995) conceptual framework of stratified reproduction and Crenshaw’s (1989) analytical framework of intersectionality, this research shows that surrogacy in Russia is culturally framed and therefore socially organised as an economic exchange, which gives rise to and reinforces different forms of intersecting reproductive stratifications. These stratifications include biological, social, geographic, geo-political and ethnic dimensions. Of particular novelty is the extension of Colen’s framework to address geographic and geo political stratifications. This was based on the finding that some women (temporarily) migrate or commute (over long distances) to work as gestational carriers. The thesis also demonstrates how an economic framing of surrogacy induced surrogacy workers to understand surrogacy gestation as work, which influenced their relationships with client parents. Given the rapid global increase in the use of surrogacy and its increasingly internationalised nature, this research into the social organisation of commercial gestational surrogacy in Russia is timely and has implications for users, medical
practitioners and regulators, as well as researchers concerned with (cross-border) surrogacy and reproductive justice
Considerations for Adapting Pre-existing Mechanistic Quantitative Systems Pharmacology Models for New Research Contexts
Pre-existing, treatment-specific resistance-associated substitutions in hepatitis C virus genotype 1 and 3 and viral RNA titers during treatment with direct-acting antivirals
Death and the artificial placenta
Artificial Amnion and Placenta Technology (AAPT)—sometimes referred to as ‘Artificial Womb Technology’—could provide an extracorporeal alternative to bodily gestations, allowing a fetus delivered prematurely from the human uterus to continue development while maintaining fetal physiology. As AAPT moves nearer to being used in humans, important ethical and legal questions remain unanswered. In this paper, we explore how the death of the entity sustained by AAPT would be characterized in law. This question matters, as legal ambiguity in this area has the potential to compound uncertainty and the suffering of newly bereaved parent(s). We first identify the existing criteria used to delineate the legal characterization of death, which occurs before birth or during the immediate neonatal period in England and Wales. We then demonstrate that attempting to apply these in the context of AAPT gives rise to a number of challenges, which make it impossible to reach a definitive conclusion as to the nature of death in AAPT using the current legal framework. In doing so, we demonstrate that the current legal framework in England and Wales may be unable to adequately capture the situation of an entity being sustained by AAPT
Integrating spirituality as a key component of patient care
Patient care frequently focuses on physical aspects of disease management, with variable attention given to spiritual needs. And yet, patients indicate that spiritual suffering adds to distress associated with illness. Spirituality, broadly defined as that which gives meaning and purpose to a person’s life and connectedness to the significant or sacred, often becomes a central issue for patients. Growing evidence demonstrates that spirituality is important in patient care. Yet healthcare professionals (HCPs) do not always feel prepared to engage with patients about spiritual issues. In this project, HCPs attended an educational session focused on using the FICA Spiritual History Tool to integrate spirituality into patient care. Later, they incorporated the tool when caring for patients participating in the study. This research (1) explored the value of including spiritual history taking in clinical practice; (2) identified facilitators and barriers to incorporating spirituality into person-centred care; and (3) determined ways in which HCPs can effectively utilize spiritual history taking. Data were collected using focus groups and chart reviews. Findings indicate positive impacts at organizational, clinical/unit, professional/personal and patient levels when HCPs include spirituality in patient care. Recommendations are offered
Systematic permutation testing in GWAS pathway analyses: identification of genetic networks in dilated cardiomyopathy and ulcerative colitis
Background: Genome wide association studies (GWAS) are applied to identify genetic loci, which are associated with complex traits and human diseases. Analogous to the evolution of gene expression analyses, pathway analyses have emerged as important tools to uncover functional networks of genome-wide association data. Usually, pathway analyses combine statistical methods with a priori available biological knowledge. To determine significance thresholds for associated pathways, correction for multiple testing and over-representation permutation testing is applied. Results: We systematically investigated the impact of three different permutation test approaches for over-representation analysis to detect false positive pathway candidates and evaluate them on genome-wide association data of Dilated Cardiomyopathy (DCM) and Ulcerative Colitis (UC). Our results provide evidence that the gold standard - permuting the case–control status – effectively improves specificity of GWAS pathway analysis. Although permutation of SNPs does not maintain linkage disequilibrium (LD), these permutations represent an alternative for GWAS data when case–control permutations are not possible. Gene permutations, however, did not add significantly to the specificity. Finally, we provide estimates on the required number of permutations for the investigated approaches. Conclusions: To discover potential false positive functional pathway candidates and to support the results from standard statistical tests such as the Hypergeometric test, permutation tests of case control data should be carried out. The most reasonable alternative was case–control permutation, if this is not possible, SNP permutations may be carried out. Our study also demonstrates that significance values converge rapidly with an increasing number of permutations. By applying the described statistical framework we were able to discover axon guidance, focal adhesion and calcium signaling as important DCM-related pathways and Intestinal immune network for IgA production as most significant UC pathway
Moving through Motherhood:Involving the Public in Research to Inform Physical Activity Promotion throughout Pregnancy and Beyond
open access articleInformation received by women regarding physical activity during and after pregnancy often lacks clarity and may be conflicting and confusing. Without clear, engaging, accessible guidance centred on the experiences of pregnancy and parenting, the benefits of physical activity can be lost. We describe a collaborative process to inform the design of evidence-based, user-centred physical activity resources which reflect diverse experiences of pregnancy and early parenthood. Two iterative, collaborative phases involving patient and public involvement (PPI) workshops, a scoping survey (n = 553) and stakeholder events engaged women and maternity, policy and physical activity stakeholders to inform pilot resource development. These activities shaped understanding of challenges experienced by maternity and physical activity service providers, pregnant women and new mothers in relation to supporting physical activity. Working collaboratively with women and stakeholders, we co-designed pilot resources and identified important considerations for future resource development. Outcomes and lessons learned from this process will inform further work to support physical activity during pregnancy and beyond, but also wider health research where such collaborative approaches are important. We hope that drawing on our experiences and sharing outcomes from this work provide useful information for researchers, healthcare professionals, policy makers and those involved in supporting physical activity behaviour
Global evolutionary analysis of chronic hepatitis C patients revealed significant effect of baseline viral resistance, including novel non-target sites, for DAA-based treatment and retreatment outcome
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