Ethics and Research

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Ethics and the ruling relations of research production

Ethics and the ruling relations of research production

Debates relating to ethics and research governance have gathered new momentum in recent years with social research coming under increased scrutiny and social researchers being held more accountable for what research they undertake and how they undertake it. Within the UK, professional associations across different branches of social research have begun to re- formulate guidelines on ethical practice. The process of ethical review has become re- institutionalised as role of research ethics committees (RECs) has expanded across the UK and North America. RECs have gained a powerful role as gatekeepers within the research process. Approaches to ethics within traditional (scientific / positivist) approaches to research frequently assume a role to 'protect' dependent and 'vulnerable' research subjects within the research process. The usefulness and appropriateness of such an approach is questionable in relation to qualitative and / or participatory approaches to research design. Researchers working within qualitative and / or participatory research paradigms are often acutely aware of ethical dilemmas contained within the process of conducting research with vulnerable groups, but try to address such dilemmas within an emergent process consistent with conducting democratic research. Too often, such research proposals are treated in a hostile way when scrutinised under traditional regimes of ethical scrutiny. There is little debate relating to the types of ethical dilemmas faced by researchers working within a participatory research paradigm and yet a consequence of re-institutionalising ethical review may be detrimental to some of the most user-friendly approaches to social research. At the same time, underpinning the re-constitution of ethical guidelines and research governance are a range of measures which clearly protect institutional interests. Such measures operate within a legal framework of liability and as a consequence deflect attention away from open debate about the moral obligations and responsibilities of researchers in relation to the production of social research (Homan 1991, 1992).
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Ethics in First Nations Research

Ethics in First Nations Research

A Research Agreement will generally accompany a Code of Ethics, providing a formal, binding contract between researcher(s) and the community that details how the elements of the Code of Ethics will be upheld. 34 The Research Agreement “ensures that the research process is transparent, that interests are appropriately balanced, and that all parties understand and agree on a range of issues”. 35 For example, a Research Agreement may identify the projected research outcomes, as well as possible risks and benefits of a project for the researcher(s) and for the community. In so doing, there will also be room in the Agreement for explanation of how the potential risks will be mitigated. In signing the Research Agreement, researcher(s) will agree to fulfill certain obligations to the community and to follow an agreed-upon set of steps in collecting, sharing, disseminating and storing data. The Research Agreement will also identify research funding sources. This creates space within the agreement for researcher(s) to identify upfront whether there are any criteria for disclosure of information, dissemination of findings and other external responsibilities that will affect the researcher(s)’ ability to fulfill their obligations and responsibilities, as laid out in the Code of Ethics and Research Agreement. A well- crafted research agreement will be produced in the language(s) most relevant to the First Nation.
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From ethics of restriction to ethics of construction: ELSA research in Norway

From ethics of restriction to ethics of construction: ELSA research in Norway

As a result, it became difficult to define clearly what all the ELSA projects had in common. ELSA included a diversity of research ap- proaches, although related to biotechnology research and develop- ment; they focused on different sectors as agriculture, aquaculture, healthcare and industry. Some included normative and descriptive projects, as well as some transcending this divide (NFR 2007a). In 2013, during the conference “The road ahead for ELSA research in Norway: Issues of quality, influence and network cooperation” it was argued by many of the participants that ELSA research in Norway from the start had been marked by high degree of contro- versy surrounding how to carry out ELSA research (Forsberg 2014). The disagreements have been related to disciplinary differences among the members in the various program boards, to the issue of how to strike the appropriate balance between empirical and theoretical projects in the call for proposals, and to finding the ap- propriate degree of interdisciplinarity in the projects. Accordingly, it can be argued that ELSA 1 was an important arena for discussions of how the ethics of science and technology should be done in Norway. Ethicists, for instance, were represented in the scientific FUGE boards, and the ELSA program received applications from a wide variety of scholarly fields, which induced discussions on quality and relevance.
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The questions of ethics in collaborative research

The questions of ethics in collaborative research

Building upon the premise that wartime atrocities should be avoided – and taking into consideration other research scandals such as the notorious Tuskegee syphilis study in the United States – the tone for legislation related to research ethics tends to position participants or subjects as potential victims who need protecting (Rhodes, 2005). The problems that have arisen from this approach are well documented. Ever-increasingly elaborate review procedures, which seek to protect victims and avoid legal liability, have developed into an ethics review system in the United States that Gunsalus (2004) claims has “created an unreasonable regulatory burden, undermined respect for important ethical oversight, and diverted resources from more pressing ethical matters” (p. 381). Frustration over these procedures has led to some investigators deceiving ethics review boards (Keith-Spiegel & Koocher, 2005). Indeed, one national survey of social and behavioural researchers in the United States indicated that 48 per cent of respondents conducted research without appropriate approval (Ashcraft & Krause, 2007). Similar review procedures in the United Kingdom have also been criticised on a number of other grounds, including over-emphasis on abstract ethical principles and failure to demonstrate the capacity to enforce ethical behaviour (Hammersley, 2009).
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Research ethics committees: agents of research policy?

Research ethics committees: agents of research policy?

Even though the idea of a physician being a consultant to help the patient make an informed choice has been put forward, it is likely that this consumerism in health care will only expand into issues where lay-persons have the main responsibility for health decisions, such as in the field of prevention and some chronic diseases. In medical research, current ethics have adopted the consumer model, largely putting the responsibility on the patient regardless of the nature of the issue being studied. The contrast between the procedures required in research and normal health care is striking. Additional research requirements may tempt physicians to continue the old method of introducing innovations into practice by rely- ing on unsystematic and uncontrolled observations. In the case of new drugs, the inflexible requirement of informed consent in emergency situations with critically ill patients may be unethical and/or unfeasible. It may result in the future with emergency medication being based on uncontrolled experimentation.
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Ethics, conflict and animal research

Ethics, conflict and animal research

The thought experiment has illuminated an important possibility. It may not be right that certain research is taking place, even when the researcher carrying it out is doing everything right! Any air of paradox about this evaporates once we see that actions are complex and can be viewed from more than one perspective. The second kind of rightness is concerned with the behaviour of the researcher, and the quality of the research. This is the sort of rightness which is monitored and policed in Australia by the animal ethics committees within institutions. These committees have to include members of animal protection and advocacy groups (as required by the national Code of Practice). As a consequence, approval of research projects and housing standards is subject to particularly tough scrutiny by people who may be in principle opposed to all research on live animals. However, these people have no input to deciding on the first kind of rightness. More accurately, they do not have input to this through their membership of institutional ethics committees.
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Mapping the review of ethics in research : the work of National Health Service (NHS) Research Ethics Committees in England

Mapping the review of ethics in research : the work of National Health Service (NHS) Research Ethics Committees in England

In this study, as well as letters, consent to interviews was checked out directly with every single participant. Examples of consent emails are included as in Appendix 5. In addition, the design of the study and the support from NRES meant that every individual member of the committees observed was informed about the study ahead of the meetings which meant that if any single member did not want to participate then the observation would not take place. Iphofen (2009) raises a dilemma for qualitative researchers in ‘fully informing’ prospective participants in that when gathering qualitative data, the participant may not fully know what they are consenting to because the researcher may not be clear. The research may move in unanticipated ways and explore unexpected areas. In this way, the commitment may be to 'fully inform' at the outset of the research (as required by an ethics committee) with any significant changes to the study being communicated to those concerned. Although I highlight below some of the ethical concerns connected to the involvement of NRES, there were undoubtedly advantages to their administrative support. Firstly, I could not have contacted every individual in the way that co- ordinators did by sending out relevant forms and secondly, I feel it may have lessened any obligation individuals felt to take part. There were certainly committees and researchers who did not consent to observation. I was informed by the co- ordinators of this. Sometimes reassurances were needed but on other occasions I was not informed of the reason or I simply did not receive a response. In any case, there was no need to communicate directly with me as the researcher and this may have been an advantage. If any committee, individual member or researcher did not want to be involved, they did not have any need to correspond directly with me. Similarly, individual consent to interview was entirely voluntary and people who did not want to be interviewed either told the co-ordinator or did not respond to the requests made.
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Elsevier Ethics in Research & Publication

Elsevier Ethics in Research & Publication

It is with this in mind that the Ethics in Research & Publication Program was created for early-career researchers by Elsevier and an independent panel of experts, well-versed in ethical issues and how to solve them. The program offers resources to help you navigate sensitive and challenging situations, including a rare glimpse into what it's like to be a victim of misconduct, from those who have experienced it first-hand. Elsevier's Ethics Toolkit contains introductory materials to help you get started, and you can visit the Ethics in Research & Publication website at ethics.elsevier.com and download the files mentioned in this Toolkit. Plus you will also find more tools including: webinars hosted by the experts, in-depth personal interviews, topical videos, white papers and timely articles on ethics, and an expanded interactive, self-assessment version of the Ethics Quiz. You can also find Spanish and Chinese transla- tions of the factsheets there.
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A review of research ethics in internet-based research

A review of research ethics in internet-based research

As Watson et al. (2007) indicate, it is probably unrealistic to expect that any single set of guidelines can cover all ethical situations concerning IBR. There is simply too much diversity across internet cultures, values and modes of operation for that to be the case. The AoIR (2002) guidelines, while useful, can only go so far. As Hair and Clark (2007) indicate, what counts as ethical research in one community will clearly differ from the next. Thus, while the nature and diversity of IRB make it difficult to be prescriptive, perhaps the most useful solution to the complex challenges of IRB lies with a form of ‘negotiated ethics’. This situated approach is grounded in the specifics of the community, the methodology and the research question(s). This does not mean an ‘anything goes’ relativist approach, but rather an open, pluralistic policy in relation to IBR ethical issues (Ess, 2009; AoIR, 2002). Flicker et al. (2004) point out that it is imperative that those conducting research online continue to be reminded of the importance of ethical conduct.
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A Qualitative Research on Administration Ethics at School

A Qualitative Research on Administration Ethics at School

In this study, data were collected according to interview method from qualitative research methods. The purpose of a structured interview is to identify the parallels and differences between the information that the interviewed individuals give and to make comparisons accordingly (Brannigan, 1985). In this research, a preliminary examination was made before the pilot application, and a draft list was prepared by searching the related literature. Subsequently, questions were prepared and applied for pilot practice, interview form was prepared for the actual interview application by carrying out pilot analysis and evaluations, determining repetitive and unnecessary questions and finalizing the interview form. Appropriate days and hours were determined with the administrators who agreed to participate in the survey and interviews were carried out. All of the interviews were conducted by the researcher individually. interviewers were asked questions in a mutual communication, were encouraged to give detailed and in-depth information, and feedback was made. The purpose of the research was stated and a photocopy of the research permission document and the interview questions were shown to the participants by explaining the ethics subjects that the data of this interviewer would be used only for research, the name of the person who interviewed, the name of the school would be hidden. Voice recordings were made with the people who gave permission in the interviews, and note-taking technique was used with those who did not.
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Improving the process of research ethics review

Improving the process of research ethics review

The researcher initiates the process of research ethics re- view by developing a proposal involving human partici- pants and submitting an application. Across standards, the principal investigator is accountable for the conduct of the study, including adherence to research ethics re- quirements. Such standards are readily available both from the source (e.g. Panel on Research Ethics [Canada], National Institutes of Health [USA], Food and Drug Administration [USA]) and, typically, through institutional websites. Researchers have an obligation to be familiar with the rules for human participant research. Developing a sound proposal where ethics requirements are met at the outset places the application in a good position at the time of submission. Researchers are accountable for delays in review when ethical standards are not met and the application must be returned for revision. Tracking the reasons for return permits solutions, such as targeted educational activities, to be developed.
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My ethics, your ethics,research ethics - lessons from Africa

My ethics, your ethics,research ethics - lessons from Africa

 Kass, N. E., Hyder, A. A., Ajuwon, A., Appiah-Poku, J., Barsdorf, N., Elsayed, D. E., Mokhachane, M., Mupenda, B., Ndebele, P., Ndossi, G., Sikateyo, B., Tangwa, G. and Tindana, P. (2007), The Structure and Function of Research Ethics Committees in Africa: A Case Study, PLoS Medicine, 4(1). doi:

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UNDERSTANDING ETHICS IN RESEARCH

UNDERSTANDING ETHICS IN RESEARCH

Another way of defining 'ethics' focuses on the disciplines that study standards of conduct, such as philosophy, theology, law, psychology, or sociology. There are several reasons why it is important to adhere to ethical norms in research. First, norms promote the aims of research, such as knowledge, truth, and avoidance of error. Second, since research often involves a great deal of cooperation and coordination among many different people in different disciplines and institutions, ethical standards promote the values that are essential to collaborative work, such as trust, accountability, mutual respect, and fairness. Third, many of the ethical norms help to ensure that researchers can be held accountable to the public. Given the importance of ethics for the conduct of research, it should come as no surprise that many different professional associations, government agencies, and universities have adopted specific codes, rules, and policies relating to research ethics
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Ethics in Clinical Research: The Indian Perspective

Ethics in Clinical Research: The Indian Perspective

order to safeguard the dignity, rights, safety and well- being of all actual or potential research participants. The scientific design and conduct of the study should also be reviewed at the outset as poor science is poor ethics. The appropriateness of the study design in relation to the objectives of the study, the statistical methodology (including sample size calculation) and the potential for reaching sound conclusions with the smallest number of research participants should be assessed. The EC should also look into matters like informed consent process, qualifications of principal investigator and supporting staff, adequacy of infrastructure and facilities, risk benefit ratio, plans to maintain confidentiality and plans for post trial access and compensations. They also need to ensure that there is regular evaluation of the ongoing studies that have received a positive decision. EC is the most important check point for promoting ethical research in the country.
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Ethics of health research with prisoners in Canada

Ethics of health research with prisoners in Canada

Canadian prisoners who enroll in health research. The TCPS identifies some relevant challenges and consider- ations, but provides few concrete recommendations. Moreover, the recent TCPS interpretations by the Panel on Research Ethics, which are intended to clarify ambi- guities in the TCPS, provide no specific recommenda- tions about how to interpret the guidelines in relation to research with prisoners since the Panel has received no questions pertaining to this matter to date [33]. The CSC requires that researchers conducting studies with prisoners should follow the TCPS, while MCSCS re- quires hospital or university REB approval before a re- search contract is ratified. With so little explicit guidance at the disposal of REBs it is not clear that these procedures provide adequate and consistent protections for participants. Moreover, there are other ethical issues related to research ethics and prisoners that are not ad- dressed in the TCPS and that require further attention than we have provided in this paper, including, how best to incorporate the Truth and Reconciliation Commis- sion’s Calls to Action into correctional services in Canada; challenges related to health research and the overrepresentation of minority races and ethnicities in Canadian prisons, e.g., Black Canadians; [34] and chal- lenges in implementing and evaluating harm reduction strategies for substance use disorders [35].
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Current Perspectives on Research Ethics in Qualitative Research

Current Perspectives on Research Ethics in Qualitative Research

Four papers in this special issue focus on ethics codes and review procedures in a critical fashion: GUISHARD, HALKOVIC, GALLETTA and LI (2018) offer a critique of the guidelines of the American Psychological Association (APA) from the perspective of qualitative, community-based researchers. The authors reconstruct how the APA code of ethics evolved historically and use their own research experience and encounters with ethics boards to show where this code has apparent epistemological gaps. SANTINELE MARTINO and SCHORMANS (2018) address the paradoxical and disempowering effects of ethical review procedures in the context of research with people labeled with intellectual disabilities. WEBBER and BRUNGER (2018) scrutinize the foundations and procedures of risk assessments that form a key part of institutional reviews. In recent years, increasing attention has been paid to potential risks not only for study participants, but also for researchers. The authors question such risk assessments arguing that these carry problematic moral undertones that usually go unnoticed and have serious adverse effects in the field of sexuality research. Last but not least, an experienced researcher involved in the revision of the Canadian ethics policy (the Tri-Council Policy Statement) shares a critical autobiographical account of his efforts to make the national guidelines more appropriate for qualitative research (VAN DEN HOONAARD, 2018).
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Developing the ethics of implementation research in health

Developing the ethics of implementation research in health

include methods such as participatory action research (PAR), 1 qualitative design, and effectiveness implementa- tion hybrid designs 2 . Flexibility is a great advantage in IR as the research question largely drives the design, the research process is iterative, and the findings at each stage feed back into the design. IR is usually carried out in close collaboration between researchers and disease control programme staff or policy-makers. The costs are generally modest, yet IR has the potential for a large magnifier effect, as effective implementation expands the impact of health interventions delivered by programmes. As a pre-requisite therefore to the design of a successful implementation strategy, the clinical/public health prob- lem must be identified, the epidemiology of the disease/ health status must be understood, and a situation ana- lysis must be performed to identify why access is sub- optimal, and what the actual bottlenecks/gaps in care delivery are (not merely presumed), such that interven- tions can be targeted to reduce these bottlenecks/gaps. In the case of adoption of a successful intervention from one country by another country or scaling-up of inter- ventions from a pilot phase to a wide area, a local situ- ational analysis should be carried out to determine differences and similarities between the communities where an intervention has been successfully imple- mented and the communities in which the intervention will be tested. IR is relevant when this analysis shows important differences but points to the proposed inter- vention as the most appropriate strategy, or justifies full scale implementation of the intervention [5]. Awareness of the appropriate application of ethical principles in IR is important in study design and data generation to ensure ethical conduct of IR and to effectively contribute to health system strengthening. In the planning stages, researchers must also be able to effectively communicate their consideration of the ethical principles to research ethics committees, who must also have insight into the adaptations of ethical principles required in IR (as opposed to traditional clinical research) such that protocols are appropriately and fairly reviewed.
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Ethics of Open Access to Biomedical Research: Just a Special Case of Ethics of Open Access to Research

Ethics of Open Access to Biomedical Research: Just a Special Case of Ethics of Open Access to Research

15. Researcher Access. The primary, fundamental and universal rationale for OA and OA mandates, in all disci- plines, including biomedicine [40], is researcher-to- researcher access (including pure and applied researchers, as well as practitioners, if any; [23]), not public access (nor even educational access). The vast majority of peer- reviewed research in all disciplines is not of direct interest to the lay public (nor even to students, other than gradu- ate students, who are already researchers). And even in biomedical research, what provides the greatest public benefit is the potential research progress (leading to even- tual applications and cures that benefit the public) that results from maximizing researcher-to-researcher access. Direct public access of course comes with the OA territory, but that is not the sole or primary ethical justification for OA, even in biomedical research.
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Ethics of Open Access to Biomedical Research: Just a Special Case of Ethics of Open Access to Research

Ethics of Open Access to Biomedical Research: Just a Special Case of Ethics of Open Access to Research

especially salient when it is public health that is being compromised by needless access restrictions. But the ethical imperative for OA is far more general: It applies to all scientific and scholarly research findings published in peer-reviewed journals. And peer-to-peer access is far more important than direct public access. Most research is funded to be conducted and published, by researchers, in order to be taken up, used, and built upon in further research and applications, again by researchers, for the benefit of the public that funded it -- not in order to generate revenue for the peer-reviewed journal publishing industry (nor even because there is a burning public desire to read [much of] it). Hence OA needs to be mandated for all research.
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The ethics of psychopharmacological research in legal minors

The ethics of psychopharmacological research in legal minors

Research has shown that children have the competence to make most treatment decisions by the age of 9 years when given simplified information, and by the age of 14 years when given adult-level information [31]. This would sug- gest that even relatively young children should be able to make their own decisions. However, research has also shown that children and adolescents can have other prob- lems with making autonomous decisions [32]. They are more sensitive to the views of the adults around them and susceptible to pressure as well as worries about offending researchers and parents if they change their minds. Having a mental disorder can have an additional impact upon treatment decision-making for children and adolescents. In some cases, they can become more vulnerable and regress in terms of needing more parental support for decisions they may ordinarily be able to make. Having a mental disorder can have complex effects on autonomy. For example, research suggests that having an eating dis- order may distort their sense of identity, values, goals in life and sense of their future [33,34]. Research also sug- gests that children with attention-deficit/hyperactivity dis- order may be influenced by values or hopes of gaining their parents' confidence when deciding whether to par- ticipate in a trial which offers them the chance to improve behaviour [Koelch M, Burkert J, Prestel A, Singer H, Schulze U, Fegert JM. The MacArthur Competence Assess- ment Tool for Clinical Research (MacCAT-CR) in child and adolescent psychiatry. General remarks about the fea-
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