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.

scholarly journals Users and Social Science Research: Policy, Problems and Possibilities

1997 ◽  
Vol 2 (3) ◽  
pp. 69-81 ◽  
Author(s):  
B. Rappert
Keyword(s):  
Research Policy ◽  
Social Research ◽  
Public Funding ◽  
Social Science Research ◽  
Academic Research ◽  
User Involvement ◽  
Science Research ◽  
Research Process ◽  
The Uk ◽  
Policy Problems

Recent times have seen a significant reorientation in public funding for academic research across many countries. Public bodies in the UK have been at the forefront of such activities, typically justified in terms of a need to meet the challenges of international competitiveness and improve quality of life. One set of mechanisms advanced for further achieving these goals is the incorporation of users’ needs into various aspects of the research process. This paper examines some of the consequences of greater user involvement in the UK Economic and Social Research Council by drawing on both empirical evidence and more speculative argumentation. In doing so it poses some of the dilemmas for conceptualizing proper user involvement.

scholarly journals The Ethical Dilemma of Lifestyle Change: Designing for sustainable schools and sustainable citizenship

2018 ◽  
Vol 4 (1) ◽  
pp. 140-155
Author(s):  
Andrea Wheeler
Keyword(s):  
Young People ◽  
Best Practice ◽  
Learning Technologies ◽  
Luce Irigaray ◽  
Social Challenges ◽  
Innovative Learning ◽  
Michael Oakeshott ◽  
The Uk ◽  
Sustainable Schools

This paper explores how participation and sustainability are being addressed by architects within the Building Schools for the Future (BSF) programme in the UK. The intentions promoted by the programme are certainly ambitious, but the ways to fulfil these aims are ill-explored. Simply focusing on providing innovative learning technologies, or indeed teaching young people about physical sustainability features in buildings, will not necessarily teach them the skills they will need to respond to the environmental and social challenges of a rapidly changing world. However, anticipating those skills is one of the most problematic issues of the programme. The involvement of young people in the design of schools is used to suggest empowerment, place-making and to promote social cohesion but this is set against government design literature which advocates for exemplars, standard layouts and best practice, all leading to forms of standardisation. The potentials for tokenistic student involvement and conflict with policy aims are evident. This paper explores two issues: how to foster in young people an ethic towards future generations, and the role of co-design practices in this process. Michael Oakeshott calls teaching the conversation of mankind. In this paper, I look at the philosophy of Hannah Arendt, Emmanuel Levinas, Maurice Merleau-Ponty and Luce Irigaray to argue that investigating the ethical dilemmas of the programme through critical dialogue with students offers an approach to meeting government objectives, building sustainable schools, and fostering sustainable citizenship.

Positionality and Ethics in the Qualitative Research of Migrants’ Homes

2014 ◽  
Vol 19 (1) ◽  
pp. 111-120 ◽  
Author(s):  
Anna Pechurina
Keyword(s):  
Qualitative Research ◽  
Power Distribution ◽  
Ethical Decision Making ◽  
Research Process ◽  
Ethical Decisions ◽  
Ethnographic Studies ◽  
Social Positioning ◽  
Rich Data ◽  
The Uk

This article discusses ethical decisions in the qualitative research of homes, with particular focus on a situation, in which a researcher studies his/her own migrant community. While exploring more common topics, such as negotiating access and receiving permission to photograph within participants’ homes, this article will also highlight issues that occur specifically within community-based ethnographic studies among Russian migrants. Using examples from the study of Russian immigrants’ homes in the UK, this article raises important questions of social positioning and power distribution within studied community. It will demonstrate the complexities of ethical decision making at different stages of the research process, which reflects the constantly changing relationship(s) between the cultural and social backgrounds and identities of researchers and participants. The insider and outsider role of the researcher is relative and the constant need to balance it, while simultaneously creating difficult ethical dilemmas, often reveals rich data and moves the whole research process forward.

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.

‘Who Wants to be a Social Engineer? A commentary on David Blunkett's Speech to the ESRC’

2000 ◽  
Vol 5 (1) ◽  
pp. 74-84 ◽  
Author(s):  
Peter Hodgkinson
Keyword(s):  
Social Science ◽  
Policy Process ◽  
Social Research ◽  
Social Scientists ◽  
Politics And Government ◽  
The Government ◽  
Education And Employment ◽  
Social Scientific ◽  
The Uk

This article is a response to a speech addressed to the Economic and Social Research Council which was made, in February this year, by the UK Secretary of State for Education and Employment, David Blunkett. The speech was entitled ‘Influence or Irrelevance: can social science improve government?’ . Blunkett's programme for engaging social science in the policy process is far from unique and many of the arguments have been heard before. However, the curiosity of the speech lies in the fact that the conception of social science which Blunkett advocates mirrors the approach New Labour itself has to politics and government. This raises some rather interesting difficulties for social scientists. How do we engage in a debate about the role of social scientific research in the policy process when our own conception of the discipline may be radically at odds with that of the government? Furthermore, New Labour's particular conception of the relationship between social and policy-making means that we not only have to contest their notion of what it is we do, but also challenge their conception of the policy process. We cannot ignore this engagement, even if we wanted to. The challenge is to address it and to do so, moreover, in terms which Blunkett might understand. This article is an attempt to start this process.

Ethics and the law involving the elderly

2017 ◽  
Author(s):  
Chris Dodds ◽  
Chandra M. Kumar ◽  
Frédérique Servin
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Informed Consent ◽  
The Elderly ◽  
Outcome Data ◽  
Ethical Principles ◽  
Assisted Death ◽  
The Uk

The role of ethics in the care of the elderly is discussed, and some of the aspects of importance to anaesthesia are reviewed. Ethical principles are commonly viewed as either consequential, where the risk/benefit balance between necessary harm (surgery) provides improved quality of life, or deontological, where it is simply the action that is judged and not the outcome. The lack of individualized outcome data is identified as a major issue for the consequential process. Consent for surgery (and anaesthesia) is described in the context of the UK, but it is applicable worldwide. The validity of informed consent is reviewed against the criteria of competence, lack of duress, and appropriately provided information. The capacity to give consent and the use of legal alternatives such as health attorneys is detailed. Finally, the debate on excellent palliative care rather than assisted death is reviewed.

scholarly journals Role of the consent form in UK veterinary practice

2020 ◽  
Vol 187 (8) ◽  
pp. 318-318
Author(s):  
Carol Gray
Keyword(s):  
Informed Consent ◽  
Thematic Analysis ◽  
Potential Role ◽  
Consent Form ◽  
Consent Process ◽  
Consent Forms ◽  
The Status ◽  
The Uk ◽  
Sufficient Space

BackgroundInformed consent from the client is required before veterinary professionals may administer treatment or perform surgery on an animal patient, except in an emergency. This study investigates the potential role(s) of the consent form in the consent process in the UK.MethodsThematic analysis was carried out on the text contained in 39 blank consent forms sourced from veterinary practices in the UK. Analysis was conducted at the levels of topical survey and thematic summary.ResultsConsent forms were used to authorise procedures, to define proposed treatment, to offer or recommend additional procedures, to convey the risks of treatment and to document the client’s financial obligations. None of the forms analysed provided sufficient space to document the accompanying conversation. Notable omissions from the submitted forms included options for treatment and benefits of treatment.ConclusionsThe consent form acts as a record of the procedure to be performed, the associated costs and the status of the person giving consent. However, from this analysis, it often fails to record the detail of the consent discussion, an essential part of the consent process. A proposal for an improved version of a veterinary consent form is provided.

scholarly journals Who’s Behind the Lens?

2016 ◽  
Vol 21 (2) ◽  
pp. 316-340 ◽  
Author(s):  
Rebecca Whiting ◽  
Gillian Symon ◽  
Helen Roby ◽  
Petros Chamakiotis
Keyword(s):  
Research Practice ◽  
Video Technology ◽  
Video Study ◽  
Participatory Video ◽  
Research Relationships ◽  
Study Participants ◽  
Reflexive Analysis ◽  
The Relationship

This article applies paradox as a metatheoretical framework for the reflexive analysis of roles within a participatory video study. This analysis moves us beyond simply describing roles as paradoxical, and thus problematic, to offer insights into the dynamics of the interrelationship between participant, researcher, and video technology. Drawing on the concept of “working the hyphens,” our analysis specifically focuses on the complex enactment of Participation-Observation and Intimacy-Distance “hyphen spaces.” We explore how video technology mediates the relationship between participant and researcher within these spaces, providing opportunities for participant empowerment but simultaneously introducing aspects of surveillance and detachment. Our account reveals how video study participants manage these tensions to achieve participation in the project. It examines the roles for the researched, the technology, and the researchers that are an outcome of this process. Our analysis advances methodology by bringing together a paradox perspective with reflexive work on research relationships to demonstrate how we can more adequately explore tensions in research practice and detailing the role of technology in the construction and management of these tensions.

scholarly journals Embodying Gender, Age, Ethnicity and Power in ‘the Field’: Reflections on Dress and the Presentation of the Self in Research with Older Pakistani Muslims

2012 ◽  
Vol 17 (3) ◽  
pp. 73-90 ◽  
Author(s):  
Maria Zubair ◽  
Wendy Martin ◽  
Christina Victor
Keyword(s):  
Research Process ◽  
Young Female ◽  
Minority Communities ◽  
Public And Private ◽  
Key Issues ◽  
Research Relationships ◽  
Embodied Self ◽  
The Uk ◽  
Do So

In recent years, there has been an increasing interest in researching people growing older in the South Asian ethnic minority communities in the UK. However, these populations have received comparatively little attention in wide-ranging discussions on culturally and socially appropriate research methodologies. In this paper, we draw on the experiences of a young female Pakistani Muslim researcher researching older Pakistani Muslim women and men, to explore the significance of gender, age and ethnicity to fieldwork processes and ‘field’ relationships. In particular, we highlight the significance of dress and specific presentations of the embodied self within the research process. We do so by focusing upon three key issues: (1) Insider/Outsider boundaries and how these boundaries are continuously and actively negotiated in the field through the use of dress and specific presentations of the embodied ‘self’; (2) The links between gender, age and space - more specifically, how the researcher's use of traditional Pakistani dress, and her differing research relationships, are influenced by the older Pakistani Muslim participants’ gendered use of public and private space; and (3) The opportunities and vulnerabilities experienced by the researcher in the field, reinforced by her use (or otherwise) of the traditional and feminine Pakistani Muslim dress. Our research therefore highlights the role of different presentations of the embodied ‘self’ to fieldwork processes and relationships, and illustrates how age, gender and status intersect to produce fluctuating insider/outsider boundaries as well as different opportunities and experiences of power and vulnerability within research relationships.

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