scholarly journals Relational ethics in palliative care research: including a person-centred approach

2019 ◽  
Vol 13 ◽  
pp. 263235241988538
Author(s):  
Erna Haraldsdottir ◽  
Anna Lloyd ◽  
Jan Dewing
Keyword(s):  
Research Ethics ◽  
Ethical Issues ◽  
Traditional Approach ◽  
Ethics Committees ◽  
Current Approach ◽  
Relational Ethics ◽  
Situational Factors ◽  
Ethical Practice ◽  
Research Participants ◽  
The Relationship

The traditional approach to research ethics is to ensure that all ethical issues are adhered to through the scrutiny of research proposals by research ethics committees, themselves sitting within national research governance frameworks. The current approach implies that all potential ethical issues can be considered and mitigated prior to the research. This article is a perspective piece whereby we consider how this approach, on its own, is not enough to ensure ethical practice. We draw attention to the limitations of current ethical procedures in the inherent detachment between the researcher and research participants. We argue that applying a person-centred approach to research ethics allows for contextual and situational factors and places the relationship between research participants and researcher as central.

scholarly journals Why research ethics should add retrospective review

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Angus Dawson ◽  
Sapfo Lignou ◽  
Chesmal Siriwardhana ◽  
Dónal P. O’Mathúna
Keyword(s):  
Research Ethics ◽  
Retrospective Review ◽  
Ethical Decision ◽  
Ethical Decision Making ◽  
Ethical Issues ◽  
Human Subjects ◽  
Ethics Committees ◽  
Current Approach ◽  
Ethical Sensitivity ◽  
Ethical Approval

Abstract Research ethics is an integral part of research, especially that involving human subjects. However, concerns have been expressed that research ethics has come to be seen as a procedural concern focused on a few well-established ethical issues that researchers need to address to obtain ethical approval to begin their research. While such prospective review of research is important, we argue that it is not sufficient to address all aspects of research ethics. We propose retrospective review as an important complement to prospective review. We offer two arguments to support our claim that prospective review is insufficient. First, as currently practiced, research ethics has become for some a ‘tick box’ exercise to get over the ‘hurdle’ of ethics approval. This fails to capture much of what is important in ethics and does not promote careful reflection on the ethical issues involved. Second, the current approach tends to be rules-based and we argue that research ethics should go beyond this to develop people’s capacity to be sensitive to the relevant moral features of their research, their ethical decision-making skills and their integrity. Retrospective review of a project’s ethical issues, and how they were addressed, could help to achieve those aims better. We believe that a broad range of stakeholders should be involved in such retrospective review, including representatives of ethics committees, participating communities and those involved in the research. All stakeholders could then learn from others’ perspectives and experiences. An open and transparent assessment of research could help to promote trust and understanding between stakeholders, as well as identifying areas of agreement and disagreement and how these can be built upon or addressed. Retrospective review also has the potential to promote critical reflection on ethics and help to develop ethical sensitivity and integrity within the research team. Demonstrating this would take empirical evidence and we suggest that any such initiatives should be accompanied by research into their effectiveness. Our article concludes with a discussion of some possible objections to our proposal, and an invitation to further debate and discussion.

Research Ethics Committees’ Oversight of Biomedical Research in South Africa: A Thematic Analysis of Ethical Issues Raised During Ethics Review of Non-Expedited Protocols

2019 ◽  
Vol 14 (2) ◽  
pp. 107-116 ◽  
Author(s):  
Blessing Silaigwana ◽  
Douglas Wassenaar
Keyword(s):  
South Africa ◽  
Research Ethics ◽  
South African ◽  
Biomedical Research ◽  
Ethical Issues ◽  
Ethics Committees ◽  
Financial Contracts ◽  
Scientific Validity ◽  
Participant Selection ◽  
Education And Awareness

In South Africa, biomedical research cannot commence until it has been reviewed and approved by a local research ethics committee (REC). There remains a dearth of empirical data on the nature and frequency of ethical issues raised by such committees. This study sought to identify ethical concerns typically raised by two South African RECs. Meeting minutes for 180 protocols reviewed between 2009 and 2014 were coded and analyzed using a preexisting framework. Results showed that the most frequent queries involved informed consent, respect for participants, and scientific validity. Interestingly, administrative issues (non-ethical) such as missing researchers’ CVs and financial contracts emerged more frequently than ethical questions such as favorable risk/benefit ratio and fair participant selection. Although not generalizable to all RECs, our data provide insights into two South African RECs’ review concerns. More education and awareness of the actual ethical issues typically raised by such committees might help improve review outcomes and relationships between researchers and RECs.

scholarly journals Is It Time to Re-Evaluate the Ethics Governance of Social Media Research?

2018 ◽  
Vol 13 (4) ◽  
pp. 452-454 ◽  
Author(s):  
G. Samuel ◽  
W. Ahmed ◽  
H. Kara ◽  
C. Jessop ◽  
S. Quinton ◽  
...  
Keyword(s):  
Social Media ◽  
Research Ethics ◽  
Ethical Issues ◽  
Real Life ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Media Ethics ◽  
Research Institution ◽  
Media Research ◽  
Social Media Research

This article reports on a U.K. workshop on social media research ethics held in May 2018. There were 10 expert speakers and an audience of researchers, research ethics committee members, and research institution representatives. Participants reviewed the current state of social media ethics, discussing well-rehearsed questions such as what needs consent in social media research, and how the public/private divide differs between virtual and real-life environments. The lack of answers to such questions was noted, along with the difficulties posed for ethical governance structures in general and the work of research ethics committees in particular. Discussions of these issues enabled the creation of two recommendations. The first is for research ethics committees and journal editors to add the category of ‘data subject research’ to the existing categories of ‘text research’ and ‘human subject research’. This would reflect the fact that social media research does not fall into either of the existing categories and so needs a category of its own. The second is that ethical issues should be considered at all stages of social media research, up to and including aftercare. This acknowledges that social media research throws up a large number of ethical issues throughout the process which, under current arrangements for ethical research governance, risks remaining unaddressed.

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.

scholarly journals Could providing financial incentives to research participants be ultimately self-defeating?

2016 ◽  
Vol 12 (3) ◽  
pp. 137-148 ◽  
Author(s):  
TL Zutlevics
Keyword(s):  
Intrinsic Motivation ◽  
Research Ethics ◽  
Financial Incentives ◽  
Financial Incentive ◽  
Ethics Committees ◽  
Ethical Guidelines ◽  
Research Participants ◽  
Human Research Ethics ◽  
Institutional Review ◽  
The Individual

Controversy over providing financial incentives to research participants has a long history and remains an issue of contention in both current discussions about research ethics and for institutional review bodies/human research ethics committees which are charged with the responsibility of deciding whether such incentives fall within ethical guidelines. The arguments both for and against financial incentives have been well aired in the literature. A point of agreement for many is that inducement in the form of financial incentive is permissible when the risk of harm to the individual is negligible in terms of degree and probability of occurrence. In the absence of harm to the individual, encouraging more people to participate in research would appear to be a good thing in so far as it will lead to statistically more robust research outcomes, which can then be translated into better healthcare and other practice. Whilst, on the face of it, this position seems highly defensible, I will explore the possibility that it is counterproductive – that is, providing individuals with financial incentives to become research participants may have the unintended outcome of reducing participation rates in some areas of research. In exploring this idea I will draw on empirical findings from the literature on crowding-out – the hypothesis that providing monetary incentives to people can backfire by overall reducing intrinsic motivation, in this instance intrinsic motivation to behave altruistically or undertake civic duties.

Ethical issues in shadowing research

2014 ◽  
Vol 9 (1) ◽  
pp. 21-40 ◽  
Author(s):  
Bart Johnson
Keyword(s):  
Ethical Issues ◽  
Participant Observation ◽  
Ethics Committees ◽  
Critical Discussion ◽  
Ethical Practice ◽  
Content Type ◽  
Procedural Ethics ◽  
Two Phases ◽  
Qualitative Methodologies ◽  
The Impact

Purpose – The purpose of this paper is to explore ethical issues associated with using the shadowing method. Design/methodology/approach – Ethical issues that arose during a 12-week shadowing study that examined the work activities and practices of Canadian healthcare CEOs are discussed. Findings – Dividing the ethics process into two phases – those addressed by ethics committees (procedural ethics) and those that revealed themselves in the field (ethics in practice) – issues and relating to sampling, informed consent, researcher roles, objectivity, participant discomforts, the impact of research on participants, confidentiality, and anonymity are investigated. This paper illustrates that while useful, procedural ethics committees are unable to establish ethical practice in and of themselves. In response, it suggests that the concept of reflexivity be applied to ethics to help researchers consider the implications of using the shadowing method, and develop a contingency for possible challenges, before they enter the field. Practical implications – This paper provides researchers considering using the shadowing method with critical insights into some of the ethical issues associated with the method. A number of questions are posed and a number of suggestions offered as to how ethical practice can be attained in the field. Given practice-based similarities between shadowing and other qualitative methodologies such as participant observation and ethnography, many of the lessons derived from this case study are also pertinent to researchers using other techniques to examine organizational and management phenomenon. Originality/value – Building on the formal and critical discussion about the shadowing method ignited by McDonald (2005), this paper identifies and discusses ethical issues associated with the shadowing method that have not been examined in either ethics or research methods literature.

Protecting vulnerable research participants: A Foucault-inspired analysis of ethics committees

2011 ◽  
Vol 18 (5) ◽  
pp. 640-650 ◽  
Author(s):  
Truls I Juritzen ◽  
Harald Grimen ◽  
Kristin Heggen
Keyword(s):  
Research Ethics ◽  
Academic Freedom ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Research Practices ◽  
Research Participants

History has demonstrated the necessity of protecting research participants. Research ethics are based on a concept of asymmetry of power, viewing the researcher as powerful and potentially dangerous and establishing ethics committees as external agencies in the field of research. We argue in favour of expanding this perspective on relationships of power to encompass the ethics committees as one among several actors that exert power and that act in a relational interplay with researchers and participants. We employ Michel Foucault’s ideas of power as an omnipresent force which is dynamic and unstable, as well as the notion that knowledge and power are inextricably intertwined. The article discusses how research ethics committees may affect academic freedom. In addition it is pointed out that research participants could be harmed — not only by unfortunate research practices, but also by being subjected to the protective efforts of ethics monitoring bodies.

Alzheimer Disease Ethics—Informed Consent and Related Issues in Clinical Trials: Results of a Survey Among the Members of the Research Ethics Committees in Sweden

2003 ◽  
Vol 15 (2) ◽  
pp. 157-170 ◽  
Author(s):  
Gunbrith Peterson ◽  
Anders Wallin
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Ethical Issues ◽  
Ethics Committees ◽  
Informed Consent Process ◽  
Research Ethics Committees ◽  
Biomedical Sciences ◽  
Men And Women ◽  
Decision Making Capacity ◽  
Participation In Research

The rapid advances in biomedical sciences have induced special moral and ethical attitudes, which ought to be taken into account. One of the most essential issues is the principles for participation in research of subjects with reduced decision-making capacity. We conducted a questionnaire survey among members of the research ethics committees in Sweden to find out their attitudes to a range of ethical issues related to research on subjects with Alzheimer's disease. One hundred thirty-six of those approached responded (66%), and 117 of the responses (56%) were considered substantially complete. There were 16 questions with fixed reply alternatives. Some central questions concerned the informed consent process. With a few exceptions, there were no significant differences in attitudes between the experts and laypersons, between persons of different ages, and between men and women. However, women and laypersons were in general keener to preserve the patient's integrity and the experts were more willing than the laypersons to allow participation of subjects with dementia in placebo-controlled trials.

Payment of research participants: current practice and policies of Irish research ethics committees

2012 ◽  
Vol 39 (9) ◽  
pp. 591-593 ◽  
Author(s):  
Eric Roche ◽  
Romaine King ◽  
Helen M Mohan ◽  
Blanaid Gavin ◽  
Fiona McNicholas
Keyword(s):  
Research Ethics ◽  
Current Practice ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Research Participants

scholarly journals Informed consent in cluster randomised trials: a guide for the perplexed

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e054213
Author(s):  
Hayden P Nix ◽  
Charles Weijer ◽  
Jamie C Brehaut ◽  
David Forster ◽  
Cory E Goldstein ◽  
...  
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Randomised Trial ◽  
Ethics Committees ◽  
Cluster Randomised Trial ◽  
Research Ethics Committees ◽  
Randomised Trials ◽  
Research Participants ◽  
Inappropriate Use ◽  
Cluster Randomised

In a cluster randomised trial (CRT), intact groups—such as communities, clinics or schools—are randomised to the study intervention or control conditions. The issue of informed consent in CRTs has been particularly challenging for researchers and research ethics committees. Some argue that cluster randomisation is a reason not to seek informed consent from research participants. In fact, systematic reviews have found that, relative to individually randomised trials, CRTs are associated with an increased likelihood of inadequate reporting of consent procedures and inappropriate use of waivers of consent. The objective of this paper is to clarify this confusion by providing a practical and useful framework to guide researchers and research ethics committees through consent issues in CRTs. In CRTs, it is the unit of intervention—not the unit of randomisation—that drives informed consent issues. We explicate a three-step framework for thinking through informed consent in CRTs: (1) identify research participants, (2) identify the study element(s) to which research participants are exposed, and (3) determine if a waiver of consent is appropriate for each study element. We then apply our framework to examples of CRTs of cluster-level, professional-level and individual-level interventions, and provide key lessons on informed consent for each type of CRT.

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