scholarly journals Vulnerability and the Consenting Subject: Reimagining Informed Consent in Embryo Donation

2019 ◽  
Vol 27 (3) ◽  
pp. 287-310
Author(s):  
Rebecca Hewer
Keyword(s):  
Informed Consent ◽  
Lived Experience ◽  
Feminist Theory ◽  
Health Research ◽  
The Body ◽  
Fertility Treatment ◽  
Embryo Donation ◽  
Feminist Theories ◽  
The Uk

AbstractInformed consent is medico-legal orthodoxy and the principal means by which research encounters with the body are regulated in the UK. However, biomedical advancements increasingly frustrate the degree to which informed consent can be practiced, whilst introducing ambiguity into its legal significance. What is more, feminist theory fundamentally disrupts the ideologically liberal foundations of informed consent, exposing it as a potentially inadequate mode of bioethical regulation. This paper explores these critiques by reference to a case study—embryo donation to health research, following fertility treatment, as regulated by the HFEA 1990—and contends that informed consent cannot adequately respond to the material realities of this research encounter. Thereafter, by drawing on feminist theories of vulnerability, this paper proffers an alternative bioethical approach, which calls for structural reform in recognition of the fundamentally bilateral constitution of self and society and a renewed appreciation for the affective/dispositional tenor of lived experience.

scholarly journals Rapid, remote and responsive research during COVID-19

2021 ◽  
Vol 14 (1) ◽  
pp. 205979912110085
Author(s):  
Jane Richardson ◽  
Barry Godfrey ◽  
Sandra Walklate
Keyword(s):  
Criminal Justice ◽  
Social Science ◽  
Health Research ◽  
Applied Research ◽  
Data Gathering ◽  
Policy And Practice ◽  
Research And Innovation ◽  
The Uk ◽  
Practical Recommendations

In March 2020, the UK Research and Innovation announced an emergency call for research to inform policy and practice responses to the COVID-19 pandemic. This call implicitly and explicitly required researchers to work rapidly, remotely and responsively. In this article, we briefly review how rapid response methods developed in health research can be used in other social science fields. After outlining the literature in this area, we use the early stages of our applied research into criminal justice responses to domestic abuse during COVID-19 as a case study to illustrate some of the practical challenges we faced in responding to this rapid funding call. We review our use of and experience with remote research methods and describe how we used and adapted these methods in our research, from data gathering through to transcription and analysis. We reflect on our experiences to date of what it means to be responsive in fast-changing research situations. Finally, we make some practical recommendations for conducting applied research in a ‘nimble’ way to meet the demands of working rapidly, remotely, responsively and, most importantly, responsibly.

A Step Towards the Adoption of Standards Within the UK Ministry of Defence

2011 ◽  
pp. 54-69
Author(s):  
Josephine W. Thomas ◽  
Steve Probets ◽  
Ray Dawson ◽  
Tim King
Keyword(s):  
Diffusion Of Innovation ◽  
The Body ◽  
Case Study Approach ◽  
Product Data ◽  
Study Approach ◽  
Body Of Knowledge ◽  
Standards Adoption ◽  
Effective Development ◽  
The Uk

This article seeks to identify the factors that have impacted the adoption of ISO 10303, the Standard for the Exchange of Product Data (STEP), within the UK Ministry of Defence. The analysis presented in this article is based on Diffusion of Innovation (DOI) Theory and the theory surrounding the Economics of Standards. Using a case study approach, the results indicate that several DOI and economic factors have impacted the adoption of STEP. These findings offer insights into some of the technological, organizational, and environmental influences on standards adoption. It is envisioned that these results will make a contribution towards the body of knowledge surrounding the factors and barriers critical to the adoption of standards like STEP, and enable more effective development and adoption of these standards.

Taught resilience programmes: a case study from the perspective of employees of a large pharmaceutical company based in the UK

2020 ◽  
Vol 2 (2) ◽  
pp. 111-129
Author(s):  
Frances Costello
Keyword(s):  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Structured Interviews ◽  
Content Type ◽  
Individual Resilience ◽  
Personal Resilience ◽  
The Uk ◽  
Almost All ◽  
The Impact

PurposeResearch was undertaken to understand whether taught resilience programmes which highlight the protective factors of resilience would impact individual resilience outcomes. The research focussed on specific resilience dimensions, change agility, physical, emotional and mental resilience, purpose in life and recovery; in an attempt to bridge the gap in understanding whether it is possible through taught programmes to improve resilience through the creation of new habits.Design/methodology/approachThe research was conducted using interpretative phenomenological analysis methods and used semi-structured interviews with 12 participants to understand participants lived experience of a one-day personal resilience programme, conducted within a private global manufacturing organisation.FindingsThe research found that all 12 participants interviewed 12–18 months post-programme made sustainable habits changes increasing personal resilience levels. Participants built new habits into their everyday lives, in the physical dimension exercising more regularly, taking breaks, changes in nutrition and creating better sleep patterns. Through increased understanding of emotional intelligence participants were able to react more favourably to adverse situations and through mental increased resilience focus achieve work and home priorities. In understanding the change journey participants found that they were able to move more quickly through the change cycle. Almost all participants found understanding their life purpose difficult and were not able to give a conclusive answer to what this might be, they found that attending the programme helped reflection in this dimension.Originality/valueThe paper includes an overview of previous resilience research but differs in its examination of the impact of a specific taught resilience programme in a large private sector organisation using IPA methodology.

scholarly journals Defining Justice and Dignity Through Gendered Peace Building: A Case Study of Gender-Based Violence During Armed Conflict in Nepal

2020 ◽  
Vol 2 (1) ◽  
pp. 56-81
Author(s):  
Susan Risal
Keyword(s):  
Lived Experience ◽  
Armed Conflict ◽  
The Body ◽  
Peace Building ◽  
Gender Based Violence ◽  
Gendered Violence ◽  
Case Study Methodology ◽  
Women's Voices ◽  
Gender Based

The prolonged transition and the long awaited journey for justice for a decade has led to increased anger and frustration among women who survived gendered violence during the Nepali armed conflict (1996-2006). During April 2017-May 2018, a case study fieldwork was conducted with women who survived conflict-related sexual violence during the armed conflict in Nepal. Using a critical theory framework and case study methodology, this research sought to understand how the women who faced gender based violence during the conflict era of Nepal define dignity and justice from their own lived experience and consequently, their needs for reparations. Ultimately, with resulting interventions by presenting these women’s voices and needs to the truth seeking commissions, other government bodies, and national and international organizations working with conflict affected women, women’s quest for dignity, justice and needs could be addressed. The findings of this study have also expanded the body of knowledge and best practices for reconciliation in contexts where gender based violence has been used as a weapon of war.

scholarly journals When Public Policy Is Guided by Misinformation: A Case Study in the Consequences of Fake News

2018 ◽  
Author(s):  
Mickey Keenan ◽  
Karola Dillenburger
Keyword(s):  
Public Policy ◽  
Health Care Systems ◽  
Scientific Discipline ◽  
The Body ◽  
The Past ◽  
Effective Interventions ◽  
Health And Social Care ◽  
Care Systems ◽  
The Uk

Since autism was first recognised, prevalence has increased rapidly. The growing economic as well as social cost to society can only be mitigated by effective interventions and supports. It is therefore not surprising that most governments have developed public policy documents to address the management of autism. Over the past 40-50 years, meaningful evidence has accrued showing that interventions based on the scientific discipline of Applied Behaviour Analysis (ABA) can help people with autism reach their potential. In view of this, nearly all of North America has laws to mandate that ABA-based interventions are available through the health care systems. In contrast, across Europe there are no such laws. In fact, the National Institute for Health and Care Excellence (NICE), the body guiding health and social policy in the UK, concluded that it could not find any evidence to support ABA, and therefore could not recommend it. This paper addresses the reasons for these diametrically opposed perspectives. In particular, it examines what happens when health and social care policy is misinformed about effective autism intervention.

scholarly journals Visioning change: Co-producing a model of involvement and engagement in research (Innovative Practice)

Dementia ◽  
2016 ◽  
Vol 18 (7-8) ◽  
pp. 3165-3172 ◽  
Author(s):  
Caroline M Swarbrick ◽  
Open Doors ◽  
EDUCATE ◽  
Katie Davis ◽  
John Keady ◽  
...  
Keyword(s):  
Lived Experience ◽  
Health Research ◽  
Working Group ◽  
Research Council ◽  
Social Research ◽  
Research Process ◽  
Innovative Practice ◽  
The Uk ◽  
The University ◽  
University Of Manchester

The involvement of people living with dementia in research has traditionally been located in the realms of ‘subject’ or ‘participant’. However, there has been an increase in demand for greater transparency by academic bidding teams (particularly within the UK) in demonstrating how people with a lived experience have been and will be involved in the research process. Located within the Economic and Social Research Council/National Institute for Health Research (ESRC/NIHR)-funded Neighbourhoods and Dementia Study (2014–2019), led by The University of Manchester (UK), this paper outlines the development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia: Open Doors, the Scottish Dementia Working Group and EDUCATE.

scholarly journals Age-discriminated IVF Access and Evidence-based Ageism: Is There a Better Way?

2021 ◽  
pp. 016224392110219
Author(s):  
Giulia Cavaliere ◽  
James Rupert Fletcher
Keyword(s):  
Evidence Base ◽  
Fertility Treatment ◽  
Potential Candidate ◽  
Vitro Fertilization ◽  
Scarce Resources ◽  
Fertility Treatments ◽  
Age Related ◽  
The Uk

Access to state-funded fertility treatments is age-restricted in many countries based on epidemiological evidence showing age-associated fertility decline and aimed at administering scarce resources. In this article, we consider whether age-related restrictions can be considered ageist and what this entails for a normative appraisal of access criteria. We use the UK as a case study due to the state-funded and centrally regulated nature of in vitro fertilization (IVF) provision. We begin by reviewing concepts of ageism and age discrimination in gerontological scholarship and contend that it is analytically useful to differentiate between them when considering age-restricted health services. We then argue that criteria to access IVF could be considered indirectly ageist so far as they rely on an age-related evidence base that manifests ageist categorizations of persons. Lastly, we examine whether there could be more normatively desirable alternatives to devise criteria to access fertility treatment, considering “lifestyle” as a potential candidate. We conclude, however, that lifestyle-based discrimination is problematic because, unlike age-based discrimination, it risks exacerbating existing socioeconomic and ethnic inequalities.

scholarly journals Ethical considerations for HIV remission clinical research involving participants diagnosed during acute HIV infection

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Adam Gilbertson ◽  
Joseph D. Tucker ◽  
Karine Dubé ◽  
Maartje Dijkstra ◽  
Stuart Rennie
Keyword(s):  
Informed Consent ◽  
Hiv Infection ◽  
Lived Experience ◽  
The Body ◽  
Responsible Conduct Of Research ◽  
People Living With Hiv ◽  
Ethical Challenges ◽  
Acute Hiv Infection ◽  
Research Recruitment ◽  
Acute Hiv

AbstractHIV remission clinical researchers are increasingly seeking study participants who are diagnosed and treated during acute HIV infection—the brief period between infection and the point when the body creates detectable HIV antibodies. This earliest stage of infection is often marked by flu-like illness and may be an especially tumultuous period of confusion, guilt, anger, and uncertainty. Such experiences may present added ethical challenges for HIV research recruitment, participation, and retention. The purpose of this paper is to identify potential ethical challenges associated with involving acutely diagnosed people living with HIV in remission research and considerations for how to mitigate them. We identify three domains of potential ethical concern for clinicians, researchers, and ethics committee members to consider: 1) Recruitment and informed consent; (2) Transmission risks and partner protection; and (3) Ancillary and continuing care. We discuss each of these domains with the aim of inspiring further work to advance the ethical conduct of HIV remission research. For example, experiences of confusion and uncertainty regarding illness and diagnosis during acute HIV infection may complicate informed consent procedures in studies that seek to recruit directly after diagnosis. To address this, it may be appropriate to use staged re-consent procedures or comprehension assessment. Responsible conduct of research requires a broad understanding of acute HIV infection that encompasses its biomedical, psychological, social, and behavioral dimensions. We argue that the lived experience of acute HIV infection may introduce ethical concerns that researchers and reviewers should address during study design and ethical approval.

Introduction: what size is ‘just right’ for a care provider?

2016 ◽  
Author(s):  
Catherine Needham ◽  
Kerry Allen ◽  
Kelly Hall
Keyword(s):  
Lived Experience ◽  
High Profile ◽  
Care Services ◽  
Experience Of Care ◽  
Policy Debates ◽  
Care Outcomes ◽  
Study Sites ◽  
The Uk ◽  
Micro Enterprises

This chapter sets out the context for the research, highlighting the growing salience of debates about the size of care organisations, but a lack of consensus about whether small is beautiful or large is efficient. It also locates the research within high profile policy debates in the UK about personalisation, personal budgets, care outcomes and austerity. The chapter also sets out how micro-enterprises are defined and gives examples of some of the micro-enterprise case studies that are included in the research. The chapter goes on to give more details of the approach to the research design, which examined how 17 micro-enterprises performed compared to 10 small, medium and large organisations in three case study sites in England, speaking to 143 people who work in or use these services. The chapter also discusses the involvement of co-researchers with lived experience of care services. The chapter finishes by summarising what follows in the rest of the book.

scholarly journals Data-driven visibility

2018 ◽  
pp. 63-79
Author(s):  
Alexandra Jønsson ◽  
Loes Bogers
Keyword(s):  
Science And Technology Studies ◽  
Healthcare Services ◽  
The Body ◽  
Skin Contact ◽  
Data Production ◽  
Artistic Interventions ◽  
The Uk ◽  
Skin To Skin ◽  
Funding Cuts

Through artistic interventions into the computational backbone of maternity services, the artists behind the Body Recovery Unit explore data production and its usages in healthcare governance. Taking their artwork The National Catalogue Of Savings Opportunities. Maternity, Volume 1: London (2017) as a case study, they explore how artists working with ‘live’ computational culture might draw from critical theory, Science and Technology Studies as well as feminist strategies within arts-led enquiry. This paper examines the mechanisms through which maternal bodies are rendered visible or invisible to managerial scrutiny, by exploring the interlocking elements of commissioning structures, nationwide information standards and databases in tandem with everyday maternity healthcare practices on the wards in the UK. The work provides a new context to understand how re-prioritisation of ‘natural’ and ‘normal’ births, breastfeeding, skin-to-skin contact, age of conception and other factors are gaining momentum in sync with cost-reduction initiatives, funding cuts and privatisation of healthcare services.

Sign in / Sign up

Export Citation Format

Share Document