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 Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e042726
Author(s):  
Stefan Nilsson ◽  
Angelica Wiljén ◽  
Jonas Bergquist ◽  
John Chaplin ◽  
Ensa Johnson ◽  
...  
Keyword(s):  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Research Process ◽  
Crossover Design ◽  
Self Report ◽  
Ethical Review ◽  
High Dose ◽  
Digital Tool ◽  
Legal Guardians ◽  
Ethical Approval

IntroductionThis study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5–17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison.Methods and analysisBoth effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child’s perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology.Ethics and disseminationEthical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council’s guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals.Trial registrationClinicalTrials.gov; NCT04433650.

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.

Ethics and the Ruling Relations of Research Production

2003 ◽  
Vol 8 (1) ◽  
pp. 70-80 ◽  
Author(s):  
Carole Truman
Keyword(s):  
Research Ethics ◽  
Ethics Committees ◽  
Research Process ◽  
Research Governance ◽  
Community Mental Health Service ◽  
Moral Obligations ◽  
Research Participants ◽  
Research Production ◽  
Health And Social Care ◽  
Ethical Approval

The role of research ethics committees has expanded across the UK and North America and the process of ethical review has become re-institutionalised under proposals for research governance proposed by government. Ethics committees have gained a powerful role as gatekeepers within the research process. Underpinning the re-constitution of ethical guidelines and research governance, are a range of measures which protect institutional interests, without necessarily providing an effective means to address the moral obligations and responsibilities of researchers in relation to the production of social research. Discussion of research ethics from the standpoint of research participants who in this paper, are service users within health and social care, provides a useful dimension to current debate. In this paper I draw upon experiences of gaining ethical approval for a research study which focused on user participation within a community mental health service. I discuss the strategies used to gain ethical approval and the ‘formal concerns’ raised by the ethics committee. I then describe and discuss ethical issues which emerged from a participants’ perspective during the actual research as it was carried out. These experiences are analysed using aspects of institutional ethnography which provides a framework to explore how the experiences of research participants are mediated by texts which govern the processes of research production. The paper highlights incongruities between the formal ethical regulation of research, and the experiences of research participants in relation to ethical concerns within a research process.

Making Ethics Work in Collaborative Projects

2005 ◽  
Vol 11 (3) ◽  
pp. 101
Author(s):  
Emily Mauldon
Keyword(s):  
Health Care ◽  
Primary Health Care ◽  
Research Ethics ◽  
Health Care Professionals ◽  
Ethics Committees ◽  
Research Process ◽  
Ethical Review ◽  
Ethical Research ◽  
Team Members ◽  
Primary Health

This article discusses problems a research team had managing their ethical obligations during a short project, and considers the implications of these problems for better understanding and carrying out ethical research in the future. Two key points will be proposed. Initially, it will be argued that the culture of ethical research as articulated within the research community may not be universally accepted within the primary health care sector. The nature of "ethical conduct" within clinical practice, service provision and research is not the same. Further, practical difficulties the researchers experienced while trying to gain approval from ethics committees and implement the proposed research plan highlight some ways in which institutional ethical review processes are structurally unsuited to the requirements of small collaborative projects. Understanding the different ways in which the term "ethics" is used will allow for a more expedient translation of concepts between different health professionals. Recognising the practical constraints ethical review places on the research process may help reduce some of the frustration primary health care professionals can experience when faced with the requirements of research ethics committees. Due to the history of, and cultural commitment to, ethical research within the university sector, those with formal academic training in research are well placed to assume responsibility for managing the ethics process when involved in cross-sectoral research. This responsibility may include the need to educate team members and study participants about the importance of research ethics.

8. Ethics

2019 ◽  
pp. 121-144
Author(s):  
Tom Clark ◽  
Liam Foster ◽  
Alan Bryman
Keyword(s):  
Research Ethics ◽  
Social Research ◽  
Research Process ◽  
Ethical Review ◽  
Ethical Practice ◽  
Vital Part ◽  
Rules Of Thumb ◽  
Review Boards

Ethics play a vital part of the research process. They provide a set of value-based principles that enable research to be conducted in an appropriate manner. Research ethics help ensure that the relationships built during the process of conducting social research are respectful and constructive, and that the student’s project does not endanger either the student or those he or she comes into contact with. This chapter provides an introduction to the practice of ethics in social research. It provides an outline of basic ethical practice, before discussing the nature and purpose of ethical review boards. It demonstrates how ethical rules of thumb are often more complicated when encountering them ‘in the field’. Finally, it explores how ethics also informs the process of writing up research.

scholarly journals Hazy Boundaries: Virtual Communities and Research Ethics

2016 ◽  
Vol 4 (4) ◽  
pp. 86-96 ◽  
Author(s):  
Helena Kantanen ◽  
Jyri Manninen
Keyword(s):  
Virtual Communities ◽  
Ethical Issues ◽  
Expert Knowledge ◽  
Human Subjects ◽  
Research Participant ◽  
Ethics Committees ◽  
Research Process ◽  
Ethical Review ◽  
Institutional Review Boards ◽  
Online Forums

This paper examines ethical issues specific to research into virtual communities. Drawing on an empirical case with online forums of education experts, we identify the following key issues: publicity versus privacy of the community; the definition of human subjects research; participant recruitment; informed consent; and ethical questions associated with observing virtual communities, and with reporting and disseminating research results. We maintain that different research cultures in different countries can present challenges when studying global forums. Acknowledging the ephemeral characteristics of Internet contexts, this paper argues that ethical considerations should be more case-based, instead of relying on one model for all solutions. We suggest that local ethics committees or institutional review boards could, with their expert knowledge of ethics, provide valuable support for researchers operating in the complex and dynamic terrain of Internet research, as well as in fields and research settings where an ethical review is not a standard part of the research process.

scholarly journals Researching Drug Sellers: An ‘experiential’ account from ‘the field’

2008 ◽  
Vol 13 (1) ◽  
pp. 31-42 ◽  
Author(s):  
Jenni Ward
Keyword(s):  
Drug Use ◽  
Ethical Issues ◽  
Criminal Activity ◽  
Research Process ◽  
Ethnographic Study ◽  
Human Interaction ◽  
Ethnographic Research ◽  
Illegal Activity ◽  
Research Relationship ◽  
Drug Selling

Ethnographic research techniques are well regarded as a way to elicit detailed understandings of human interaction. They are particularly useful for examining ‘deviant’ cultures and the dynamics of illegal activity. Though, ethnographic research on illegal activity can be ‘messy’. This paper reports some practical and ethical issues encountered while carrying out an ethnographic study of drug use and drug selling among ‘rave’ dance participants in London. In particular it addresses the issue of using friendship to assist the research relationship and the use of a semi-covert style of research. Connected to this, it touches on the emotional work of the fieldworker whilst undertaking ‘sensitive’ research. It makes a timely contribution to discussions of ‘reflexivity’ in the research process, as well as the discourse on social sciences research governance. It argues the standardized codes of ethical conduct can not easily be translated to ethnographic research on criminal activity, such as drug use and drug selling.

Guidelines for Ethical Review of Qualitative Research

2005 ◽  
Vol 1 (3) ◽  
pp. 90-96 ◽  
Author(s):  
J. Walker ◽  
I. Holloway ◽  
S. Wheeler
Keyword(s):  
Health Care ◽  
Qualitative Research ◽  
Research Ethics ◽  
Ethical Issues ◽  
Ethics Committees ◽  
Ethical Review ◽  
Research Ethics Committees ◽  
Different Types ◽  
Ethical Approval ◽  
Key Questions

In recognition of the important ethical issues posed by qualitative research in health care, the authors present key questions to aid ethical review. The purpose is to assist lay and professional members of research ethics committees in their assessment of applications involving qualitative research methods and to inform researchers intending to submit such applications for ethical approval. For the benefit of those less familiar with this type of research, the authors include an overview of different types of qualitative research, together with an explanation of terms commonly used by qualitative researchers.

The Science and Art of Interviewing

2020 ◽  
Author(s):  
Kathleen Gerson ◽  
Sarah Damaske
Keyword(s):  
Social Research ◽  
Research Question ◽  
Research Process ◽  
Social Contexts ◽  
Science And Art ◽  
The Social ◽  
Interview Guide ◽  
Hidden Patterns ◽  
User Friendly ◽  
Depth Interviews

Qualitative interviewing is one of the most widely used methods in social research, but it is arguably the least well understood. To address that gap, this book offers a theoretically rigorous, empirically rich, and user-friendly set of strategies for conceiving and conducting interview-based research. Much more than a how-to manual, the book shows why depth interviewing is an indispensable method for discovering and explaining the social world—shedding light on the hidden patterns and dynamics that take place within institutions, social contexts, relationships, and individual experiences. It offers a step-by-step guide through every stage in the research process, from initially formulating a question to developing arguments and presenting the results. To do this, the book shows how to develop a research question, decide on and find an appropriate sample, construct an interview guide, conduct probing and theoretically focused interviews, and systematically analyze the complex material that depth interviews provide—all in the service of finding and presenting important new empirical discoveries and theoretical insights. The book also lays out the ever-present but rarely discussed challenges that interviewers routinely encounter and then presents grounded, thoughtful ways to respond to them. By addressing the most heated debates about the scientific status of qualitative methods, the book demonstrates how depth interviewing makes unique and essential contributions to the research enterprise. With an emphasis on the integral relationship between carefully crafted research and theory building, the book offers a compelling vision for what the “interviewing imagination” can and should be.

scholarly journals Living bioethics, clinical ethics committees and children's consent to heart surgery

2021 ◽  
pp. 147775092110341
Author(s):  
Priscilla Alderson ◽  
Deborah Bowman ◽  
Joe Brierley ◽  
Martin J. Elliott ◽  
Romana Kazmi ◽  
...  
Keyword(s):  
Clinical Ethics ◽  
Heart Surgery ◽  
Social Research ◽  
Ethics Committees ◽  
Companion Paper ◽  
Ethics Committee ◽  
Research Report ◽  
Discussion Paper ◽  
Clinical Ethics Committee ◽  
Clinical Ethics Committees

This discussion paper considers how seldom recognised theories influence clinical ethics committees. A companion paper examined four major theories in social science: positivism, interpretivism, critical theory and functionalism, which can encourage legalistic ethics theories or practical living bioethics, which aims for theory–practice congruence. This paper develops the legalistic or living bioethics themes by relating the four theories to clinical ethics committee members’ reported aims and practices and approaches towards efficiency, power, intimidation, justice, equality and children’s interests and rights. Different approaches to framing ethical questions are also considered. Being aware of the four theories’ influence can help when seeking to understand and possibly change clinical ethics committee routines. The paper is not a research report but is informed by a recent study in two London paediatric cardiac units. Forty-five practitioners and related experts were interviewed, including eight members of ethics committees, about the work of informing, preparing and supporting families during the extended process of consent to children’s elective heart surgery. The mosaic of multidisciplinary teamwork is reported in a series of papers about each profession, including this one on bioethics and law and clinical ethics committees’ influence on clinical practice. The qualitative social research was funded by the British Heart Foundation, in order that more may be known about the perioperative views and needs of all concerned. Questions included how disputes can be avoided, how high ethical standards and respectful cooperation between staff and families can be encouraged, and how minors’ consent or refusal may be respected, with the support of clinical ethics committees.

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