scholarly journals Ethical Regulation and Visual Methods: Making Visual Research Impossible or Developing Good Practice?

2012 ◽  
Vol 17 (1) ◽  
pp. 3-12 ◽  
Author(s):  
Rose Wiles ◽  
Amanda Coffey ◽  
Judy Robison ◽  
Jon Prosser
Keyword(s):  
Detrimental Effect ◽  
Social Research ◽  
Good Practice ◽  
Ethical Review ◽  
Visual Methods ◽  
Research Practice ◽  
Ethical Challenges ◽  
Visual Research ◽  
Ethical Approval ◽  
The Uk

The ethical regulation of social research in the UK has been steadily increasing over the last decade or so and comprises a form of audit to which all researchers in Higher Education are subject. Concerns have been raised by social researchers using visual methods that such ethical scrutiny and regulation will place severe limitations on visual research developments and practice. This paper draws on a qualitative study of social researchers using visual methods in the UK. The study explored their views, the challenges they face and the practices they adopt in relation to processes of ethical review. Researchers reflected on the variety of strategies they adopted for managing the ethical approval process in relation to visual research. For some this meant explicitly ‘making the case’ for undertaking visual research, notwithstanding the ethical challenges, while for others it involved ‘normalising’ visual methods in ways which delimited the possible ethical dilemmas of visual approaches. Researchers only rarely identified significant barriers to conducting visual research from ethical approval processes, though skilful negotiation and actively managing the system was often required. Nevertheless, the climate of increasing ethical regulation is identified as having a potential detrimental effect on visual research practice and development, in some instances leading to subtle but significant self-censorship in the dissemination of findings.

scholarly journals Institutional Ethics Challenges to Sex Work Researchers: Committees, Communities, and Collaboration

2021 ◽  
pp. 136078042110028
Author(s):  
Monique Huysamen ◽  
Teela Sanders
Keyword(s):  
Sex Work ◽  
Common Ground ◽  
Good Practice ◽  
Academic Research ◽  
Ethical Review ◽  
Ethical Challenges ◽  
Institutional Ethics ◽  
Personal Experiences ◽  
Ethical Approval ◽  
Ethical Clearance

Doing research in the field of sex work studies throws up challenges. Among these are the restrictions and regulatory issues placed on researchers by institutional ethical review processes. We draw on academic research and our personal experiences as two researchers who have been involved with many sex work research projects to illustrate how sex work researchers face a set of challenges relating to ethics – we define these as institutional ethics challenges rather than ethical challenges. They are the challenges associated with applying for and obtaining ethical approval from research institutions and funders to conduct research on stigmatised and potentially criminalised topics. This article has three aims. First, to discuss the institutional ethics challenges that sex work researchers may encounter when applying for ethical clearance. Second, to assist researchers in making a case for their research by communicating the value of doing research on sex work in contexts where it remains criminalised and by placing the assumed risks associated with sex work research into perspective. Finally, to offer a pathway forward regarding how, guided by co-produced research protocols, researchers and sex work Communities can find common ground for good practice to enhance collaboration and foster genuinely ethical research.

scholarly journals Visual methods and voice in disabled childhoods research: troubling narrative authenticity

2018 ◽  
Vol 19 (4) ◽  
pp. 363-381 ◽  
Author(s):  
Janice McLaughlin ◽  
Edmund Coleman-Fountain
Keyword(s):  
Young People ◽  
Social Research ◽  
Photo Elicitation ◽  
Visual Methods ◽  
Research Practice ◽  
Children And Young People ◽  
The Social ◽  
Age Appropriate ◽  
The Uk ◽  
Do So

Visual methods are a popular way of engaging children and young people in research. Their growth comes out of a desire to make research practice more appropriate and meaningful to them. The auteur approach emphasises the need to explore with young participants why they produce the images they do, so that adult researchers do not impose their own readings. This article, while recognising the value of such visual techniques, argues that their benefit is not that they are more age appropriate, or that they are more authentic. Instead it lies in their capacity to display the social influences on how participants, of any age, represent themselves. The article does so through discussion of an Economic and Social Research Council research project, which made use of visual and other creative methods, undertaken in the UK with disabled young people. The research involved narrative and photo elicitation interviews, the production of photo journals, and creative practice workshops aimed at making representational artefacts. Through analysing the photography, the journals and interviews the article examines what it was research participants sought to capture and also what influenced the types of photographs they gathered and the type of person they wanted to represent. We argue that they aimed to counter negative representations of disability by presenting themselves as happy, active and independent, in doing so they drew from broader visual iconography that values certain kinds of disabled subject, while disvaluing others.

scholarly journals What factors promote or inhibit implementation of a new procedure for screening and treatment of malnutrition in community settings? A prospective process evaluation of theImplementing Nutrition Screening in Community Care for Older People(INSCCOPe) project (UK)

BMJ Open ◽  
2019 ◽  
Vol 9 (2) ◽  
pp. e023362 ◽  
Author(s):  
Mike Bracher ◽  
Jane Murphy ◽  
Katherine Steward ◽  
Kathy Wallis ◽  
Carl R May
Keyword(s):  
Older People ◽  
Process Evaluation ◽  
Community Care ◽  
Evaluation Study ◽  
Routine Care ◽  
Ethical Review ◽  
Nutrition Screening ◽  
Ethical Approval ◽  
The Uk ◽  
Care For Older People

IntroductionMalnutrition remains underdetected, undertreated and often overlooked by those working with older people in primary care in the UK. A new procedure for screening and treatment of malnutrition is currently being implemented by a large National Health Service (NHS) trust in England, incorporating a programme of training for staff working within Integrated Community Teams and Older People’s Mental Health teams. Running in parallel, the Implementing Nutrition Screening in Community Care for Older People process evaluation study explores factors that may promote or inhibit its implementation and longer term embedding in routine care, with the aim of optimising sustainability and scalability.Methods and analysisImplementation will be assessed through observation of staff within a single area of the trust, in addition to the procedure development and delivery group (PDDG). Data collection will occur at three observation points: prior to implementation of training, baseline (T0); 2 months following training (T1); and 8 months following training (T2). Observation points will consist of a survey and follow-up semistructured telephone interview with staff. Investigation of the PDDG will involve: observations of discussions around development of the procedure; semistructured telephone interviews prior to implementation, and at 6 months following implementation. Quantitative data will be described using frequency tables reporting by team type, healthcare provider role group, and total study sample (Wilcoxon rank-sum and Wilcoxon signed-rank tests may also be conducted if appropriate. Audio and transcription data will be analysed using Nomarlization Process Theory as a framework for deductive thematic analysis (using the NVIVO CAQDAS software package).Ethics and disseminationEthical approval for the study has been granted through institutional ethical review (Bournemouth University); NHS Research Ethics committee approval was not required. Dissemination will occur through presentations to academic and practitioner audiences and publication results in peer-reviewed academic journals.

Informed Consent and the Research Process: Following Rules or Striking Balances?

2007 ◽  
Vol 12 (2) ◽  
pp. 99-110 ◽  
Author(s):  
Rose Wiles ◽  
Graham Crow ◽  
Vikki Charles ◽  
Sue Heath
Keyword(s):  
Learning Disabilities ◽  
Informed Consent ◽  
Best Practice ◽  
Social Research ◽  
Research Process ◽  
Research Practice ◽  
Ethical Practice ◽  
The Uk ◽  
Study Participants

Gaining informed consent from people being researched is central to ethical research practice. There are, however, several factors that make the issue of informed consent problematic, especially in research involving members of groups that are commonly characterised as ‘vulnerable’ such as children and people with learning disabilities. This paper reports on a project funded by the UK Economic and Social Research Council (ESRC) which was concerned to identify and disseminate best practice in relation to informed consent in research with six such groups. The context for the study is the increased attention that is being paid to the issue of informed consent in research, not least because of the broad changes taking place in research governance and regulation in the UK. The project involved the analysis of researchers’ views and experiences of informed consent. The paper focuses on two particular difficulties inherent in the processes of gaining and maintaining informed consent. The first of these is that there is no consensus amongst researchers concerning what comprises ‘informed consent’. The second is that there is no consensus about whether the same sets of principles and procedures are equally applicable to research among different groups and to research conducted within different methodological frameworks. In exploring both these difficulties we draw on our findings to highlight the nature of these issues and some of our participants’ responses to them. These issues have relevance to wider debates about the role of guidelines and regulation for ethical practice. We found that study participants were generally less in favour of guidelines that regulate the way research is conducted and more in favour of guidelines that help researchers to strike balances between the conflicting pressures that inevitably occur in research.

Exploring research relationships and other ethical challenges of participatory visual research in remote environments

2018 ◽  
Vol 55 (3) ◽  
pp. 604-623
Author(s):  
Meredith Nash ◽  
Robyn Moore
Keyword(s):  
Critical Reflection ◽  
Ethical Issues ◽  
Research Participation ◽  
Research Process ◽  
Women In Science ◽  
Visual Methods ◽  
Ethical Challenges ◽  
Visual Research ◽  
Science Technology ◽  
Engineering Mathematics

This critical reflection provides fellow researchers with insights into the ethical challenges of using visual methods in remote environments. We draw on Fine’s notion of ‘working the hyphens’ to explore the complexities of studying a leadership program for women in science, technology, engineering, mathematics and medicine (STEMM) on a ship in Antarctica. We reflect on how our researcher identities and relationships with participants shaped the research process and emergent ethical tensions. For instance, we discuss ethical issues that arose in relation to the contextual and relational aspects of the environment including psychological and physical demands of research participation in Antarctica, privacy and isolation in remote environments, and rapport. We also discuss issues related to participant-produced video diaries specifically including consent, confidentiality and participant safety. To conclude, we highlight implications for visual research in other remote settings.

scholarly journals A Clash of Paradigms? Ethnography and Ethics Approval

SAGE Open ◽  
2017 ◽  
Vol 7 (1) ◽  
pp. 215824401769716 ◽  
Author(s):  
Virginia Mapedzahama ◽  
Tinashe Dune
Keyword(s):  
Structural Changes ◽  
Social Research ◽  
Ethics Committees ◽  
Research Process ◽  
Ethical Review ◽  
Ethnographic Research ◽  
Rural Nursing ◽  
Research Relationship ◽  
Ethical Approval ◽  
Ethics Guidelines

Obtaining ethics approval from university ethics committees is an important part of the research process in Australia and internationally. However, for researchers engaging in ethnographic work, obtaining ethics approval can (re)present significant hurdles to overcome in planning and facilitating a research project. In this article, we discuss potential challenges of reconciling the differences between institutional ethical review standards and the reality of ethnographic research. To do so, we reflect on our own experiences seeking ethics approval for a study on racialized visibility in rural nursing and another on the experiences of gender and sexuality diverse older women. We focus on two particular queries from ethics committees that reaffirm, for us, the incompatibility of biomedically informed ethics guidelines for naturalistic, ethnographic research. The article draws on four major points of contention regarding ethical approval processes designed for biomedical research and applied to social research. With respect to social research, these are (a) the associated risks, (b) predictive informed consent, (c) the power held by social researchers, and (d) biomedical emphasis on distance and universalism within the research relationship. This article suggests a reformulation of ethics guidelines and structures such that ethics committees are better able to engage with ethnographic (and other social) research. Although these debates and structural changes may not be relevant for all social or ethnographic research, exploring these ethical difficulties is paramount to redefining expectations and the positivist standards upon which social research is often measured.

scholarly journals A study protocol of qualitative data sharing practices in clinical trials in the UK and Ireland: towards the production of good practice guidance

2021 ◽  
Vol 4 ◽  
pp. 47
Author(s):  
Catherine Houghton ◽  
Megan McCarthy ◽  
Katie Gillies ◽  
Nikki Rousseau ◽  
Julia Wade ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Data Sharing ◽  
Qualitative Data ◽  
Social Research ◽  
Good Practice ◽  
Future Research ◽  
Work Package ◽  
Related Data ◽  
Information Leaflets ◽  
The Uk

Background: Data sharing enables researchers to conduct novel research with previously collected data sets, thus maximising scientific findings and cost effectiveness, and reducing research waste. The value of sharing anonymised data from clinical trials is well recognised with a moderated access approach recommended. While substantial challenges to data sharing remain, there are additional challenges for qualitative data. Qualitative data including videos, interviews, and observations are often more readily identifiable than quantitative data. Existing guidance from UK Economic and Social Research Council applies to sharing qualitative data but does not address the additional challenges related to sharing qualitative data collected within trials, including the need to incorporate the necessary information and consent into already complex recruitment processes, with the additional sensitive nature of health-related data. Methods: Work package 1 will involve separate focus group interviews with members of each stakeholder group: trial managers, clinical trialists, qualitative researchers, members of research funding bodies and trial participants who have been involved in qualitative research. Data will be analysed using thematic analysis and managed within QSR NVivo to enhance transparency. Work package 2 will involve a documentary analysis of current consent procedures for qualitative data collected as part of the conduct of clinical trials. We will include documents such as participant information leaflets and consent forms for the qualitative components in trials. We will extract data such as whether specific clauses for data sharing are included in the consent form. Content analysis will be used to analyse whether and how consent is being obtained for qualitative data sharing. Conclusions: This study will provide insight into the existing practice of sharing of qualitative data in clinical trials and the current issues and opportunities, to help shape future research and development of guidance to encourage maximum learning to be gained from this valuable data.

The Ethics of AI in Biomedical Research, Patient Care, and Public Health

2020 ◽  
pp. 702-718 ◽  
Author(s):  
Alessandro Blasimme ◽  
Effy Vayena
Keyword(s):  
Public Health ◽  
Patient Care ◽  
Biomedical Research ◽  
Disease Surveillance ◽  
Ethical Issues ◽  
Ethical Review ◽  
Ethical Challenges ◽  
Healthcare Provision ◽  
Social Scientists ◽  
Ethical Frameworks

This chapter explores ethical issues raised by the use of artificial intelligence (AI) in the domain of biomedical research, healthcare provision, and public health. The litany of ethical challenges that AI in medicine raises cannot be addressed sufficiently by current regulatory and ethical frameworks. The chapter then advances the systemic oversight approach as a governance blueprint, which is based on six principles offering guidance as to the desirable features of oversight structures and processes in the domain of data-intense biomedicine: adaptivity, flexibility, inclusiveness, reflexivity, responsiveness, and monitoring (AFIRRM). In the research domain, ethical review committees will have to incorporate reflexive assessment of the scientific and social merits of AI-driven research and, as a consequence, will have to open their ranks to new professional figures such as social scientists. In the domain of patient care, clinical validation is a crucial issue. Hospitals could equip themselves with “clinical AI oversight bodies” charged with the task of advising clinical administrators. Meanwhile, in the public health sphere, the new level of granularity enabled by AI in disease surveillance or health promotion will have to be negotiated at the level of targeted communities.

ESRC Review

2020 ◽  
pp. 657-698
Author(s):  
Simeon J. Yates ◽  
Jordana Blejmar
Keyword(s):  
Social Research ◽  
Social Science Research ◽  
Research Work ◽  
Science Research ◽  
Wide Range ◽  
The Us ◽  
Levels Of Automation ◽  
The Uk ◽  
Technological World ◽  
Ways Of Being

Two workshops were part of the final steps in the Economic and Social Research Council (ESRC) commissioned Ways of Being in a Digital Age project that is the basis for this Handbook. The ESRC project team coordinated one with the UK Defence Science and Technology Laboratory (ESRC-DSTL) Workshop, “The automation of future roles”; and one with the US National Science Foundation (ESRC-NSF) Workshop, “Changing work, changing lives in the new technological world.” Both workshops sought to explore the key future social science research questions arising for ever greater levels of automation, use of artificial intelligence, and the augmentation of human activity. Participants represented a wide range of disciplinary, professional, government, and nonprofit expertise. This chapter summarizes the separate and then integrated results. First, it summarizes the central social and economic context, the method and project context, and some basic definitional issues. It then identifies 11 priority areas needing further research work that emerged from the intense interactions, discussions, debates, clustering analyses, and integration activities during and after the two workshops. Throughout, it summarizes how subcategories of issues within each cluster relate to central issues (e.g., from users to global to methods) and levels of impacts (from wider social to community and organizational to individual experiences and understandings). Subsections briefly describe each of these 11 areas and their cross-cutting issues and levels. Finally, it provides a detailed Appendix of all the areas, subareas, and their specific questions.

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