Confidentiality in participatory research

2014 ◽  
Vol 23 (4) ◽  
pp. 442-454 ◽  
Author(s):  
Elmira Petrova ◽  
Jan Dewing ◽  
Michelle Camilleri
Keyword(s):  
Research Ethics ◽  
Ethical Issues ◽  
Field Work ◽  
Research Process ◽  
Ethics Committee ◽  
Ethical Challenges ◽  
Ethical Guidelines ◽  
Case Study Methodology ◽  
Research Ethics Committee ◽  
Practice Development

Aim: This article presents key ethical challenges that were encountered when conducting a participatory qualitative research project with a very specific, small group of nurses, in this case with practice development nurses in Malta. Background: With the small number of nurses employed in practice development roles in Malta, there are numerous difficulties of maintaining confidentiality. Poorly constructed interventions by the researcher could have resulted in detrimental effects to research participants and the overall trustworthiness of the research. Generally, ethical guidelines for research exist to reinforce validity of research; however, there is not an established consensus on how these strategies can be utilised in some types of qualitative field work. Research design: The researcher used an exploratory case study methodology. The sample consisted of 10 participants who were interviewed twice using face-to-face interviews, over a period of 2 months. Ethical considerations: The study was ethically reviewed by the University Research Ethics Committee and the Faculty Research Ethics Committee, University of Malta. The participants referred to in this article have been given adequate information about the study and their consent has been obtained. Discussion: Numerous strategies for ensuring confidentiality during recruitment of the participants, during data collection, during transcription and data analysis and during dissemination of research results assisted the researcher in responding to potential and actual ethical issues. Conclusion: This article emphasises the main strategies that can be used to respond to ethical challenges when researching with a small easily identifiable group. The learning discussed here may be relevant to or even transferable to other similar research studies or research contexts. These methods fostered a greater credibility throughout the research process and predisposed the participants to greater trust, and thus, they disclosed their experiences and speak more freely, thus enhancing the quality of the study.

scholarly journals Ethical issues of informed consent in malaria research proposals submitted to a research ethics committee in Thailand: a retrospective document review

2017 ◽  
Vol 18 (1) ◽  
Author(s):  
Pornpimon Adams ◽  
Sukanya Prakobtham ◽  
Chanthima Limpattaracharoen ◽  
Sumeth Suebtrakul ◽  
Pitchapa Vutikes ◽  
...  
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Ethical Issues ◽  
Ethics Committee ◽  
Malaria Research ◽  
Research Ethics Committee ◽  
Document Review

Ethical Issues in Research Involving Employees and Students

2020 ◽  
Author(s):  
David B. Resnik
Keyword(s):  
Research Ethics ◽  
Ethical Issues ◽  
Ethics Committee ◽  
Undue Influence ◽  
Research Ethics Committee ◽  
Direct Benefits ◽  
Potential Benefits

Employees and students often participate in research conducted or supported by investigators at their organizations or institutions. Most of these studies do not provide direct benefits to participants, but some do. While these studies offer potential benefits for society, they raise ethical issues related to coercion, undue influence, privacy, confidentiality, and risk. Investigators should pay special attention to these issues when designing and implementing studies. Relatedly, research ethics committee members should address these issues when reviewing or overseeing studies. This chapter will both review the ethical issues related to including employees and students in research and discuss some practices and policies for protecting their rights and welfare.

Ethical Considerations in Using Social Media to Engage Research Participants: Perspectives of Australian Researchers and Ethics Committee Members

2019 ◽  
Vol 15 (1-2) ◽  
pp. 12-27 ◽  
Author(s):  
Stacey Hokke ◽  
Naomi J. Hackworth ◽  
Shannon K. Bennetts ◽  
Jan M. Nicholson ◽  
Patrick Keyzer ◽  
...  
Keyword(s):  
Social Media ◽  
Research Ethics ◽  
Ethical Issues ◽  
Ethics Committee ◽  
Empirical Literature ◽  
Ethical Guidelines ◽  
Ethical Considerations ◽  
Ethical Concerns ◽  
Human Research Ethics ◽  
Additional Support

Researchers increasingly use social media (SM) to recruit, retain, and trace participants, yet empirical literature investigating the ethics of engaging participants via SM is lacking. We conducted a survey of 401 Australian researchers and human research ethics committee (HREC) members to examine their experience, attitudes, and ethical concerns toward engaging participants via SM. Data revealed that researchers and HREC members share similar concerns and attitudes about using SM in general and in research. We identified a strong demand for additional support, training, and guidance on SM research ethics. This need reflects researchers’ and HREC members’ limited confidence and knowledge of ethical issues in this context and a lack of awareness of available SM-specific ethical guidelines.

scholarly journals Implementation of the Assistive Product List (APL) in Malawi through development of appropriate policy and systems: an action research protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e040281 ◽  
Author(s):  
Ikenna D Ebuenyi ◽  
Emma M Smith ◽  
Juba Kafumba ◽  
Monica Z Jamali ◽  
Alister Munthali ◽  
...  
Keyword(s):  
Action Research ◽  
Research Ethics ◽  
Low Income ◽  
Research Process ◽  
Ethics Committee ◽  
World Health ◽  
Low Income Countries ◽  
Persons With Disabilities ◽  
Research Ethics Committee ◽  
Assistive Product

IntroductionAssistive technology (AT) is important for the achievement of the sustainable development goals (SDGs) for persons with disabilities (PWD). Increasingly, studies suggest a significant gap between the need for and demand for and provisions of AT for PWD in low-income and middle-income settings. Evidence from high income countries highlights the importance of robust AT policies to the achievement of the recommendations of the World Health Assembly on AT. In Malawi, there is no standalone AT policy. The objectives of the Assistive Product List Implementation Creating Enablement of inclusive SDGs (APPLICABLE) project, are to propose and facilitate the development of a framework for creating effective national AT policy and specify a system capable of implementing such policies in low-income countries such as Malawi.Method and analysisWe propose an action research process with stakeholders in AT in Malawi. APPLICABLE will adopt an action research paradigm, through developing a shared research agenda with stakeholders and including users of AT. This involves the formation of an Action Research Group that will specify the priorities for practice—and policy-based evidence, in order to facilitate the development of contextually realistic and achievable policy aspirations on AT in Malawi and provide system strengthening recommendations that will ensure that the policy is implementable for their realisation. We will undertake an evaluation of this policy by measuring supply and support for specific AT prior to, and following the implementation of the policy recommendations.Ethics and disseminationThe study protocol was approved by Maynooth University Research Ethics Committee (SRESC-2019-2378566) and University of Malawi Research Ethics Committee (P.01/20/10). Findings from the study will be disseminated by publication in peer-reviewed journals, presentations to stakeholders in Malawi, Ireland and international audiences at international conferences.

scholarly journals Overcoming ethical barriers to research

2017 ◽  
Vol 14 (3) ◽  
pp. 1-9
Author(s):  
Helen E Machin ◽  
Steven M Shardlow
Keyword(s):  
Research Ethics ◽  
Social Groups ◽  
Ethics Committee ◽  
University Research ◽  
Ethical Challenges ◽  
Research Ethics Committee ◽  
Chinese Migrants ◽  
The Uk ◽  
General Guidance

Researchers engaged in studies about ‘hidden social groups’ are likely to face several ethical challenges. Using a study with undocumented Chinese migrants in the UK, challenges involved in obtaining approval by a university research ethics committee are explored. General guidance about how to resolve potential research ethics issues, with particular reference to ‘hidden social groups’, prior to submission to a research ethics committee is presented.

scholarly journals Challenges During Review of COVID-19 Research Proposals: Experience of Faculty of Medicine, Ain Shams University Research Ethics Committee, Egypt

2021 ◽  
Vol 8 ◽  
Author(s):  
Diaa Marzouk ◽  
Iman Sharawy ◽  
Isabelle Nakhla ◽  
Mostafa El Hodhod ◽  
Hoda Gadallah ◽  
...  
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Ethics Committees ◽  
Ethics Committee ◽  
University Research ◽  
Online Research ◽  
Research Ethics Committees ◽  
Ethical Challenges ◽  
Research Ethics Committee ◽  
Research Protocols

The COVID-19 pandemic resulted in an overwhelming increase in research studies submitted to research ethics committees (RECs) presenting many ethical challenges. This article aims to report the challenges encountered during review of COVID-19 research and the experience of the Faculty of Medicine, Ain Shams University Research Ethics Committee (FMASU REC). From April 10, 2020, until October 13, 2020, the FMASU REC reviewed 98 COVID-19 research protocols. This article addressed the question of how to face an overwhelming amount of research submitted to the REC while applying the required ethical principles. Ethical challenges included a new accelerated mode of review, online meetings, balance of risks vs. benefits, measures to mitigate risks, co-enrolment in different studies, protection of a vulnerable COVID-19 population, accelerated decisions, online research, how to handle informed consent during the pandemic, and justification of placebo arm.

scholarly journals Training Needs Of Research Ethics Committee Members In Cameroon Regarding Research Participant Protection

2021 ◽  
Author(s):  
Ingrid Marcelle Koutio Douanla ◽  
Paul Nyibio Ntsekendio ◽  
Frank Forex Kiadjieu Dieumo ◽  
Felicité Tabala Naah ◽  
Fernando Kemta Lekpa ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Research Ethics ◽  
Ethical Issues ◽  
Research Participant ◽  
Ethics Committee ◽  
Training Needs ◽  
Research Protocol ◽  
Ethical Evaluation ◽  
Research Ethics Committee ◽  
Research Protocols

Abstract Background The capacity of the Research Ethic Committee (REC) members to review research protocol is one of the frequently raised problems. The purpose of this study was to assess training needs of members of research ethics committee in Cameroon regarding research participant protection.Methods It was a cross-sectional descriptive study conducted in all the regions of Cameroon during the last quarter of the year 2020, assessing training needs of REC members’ ethical evaluation of health research protocols. Data were collected from all eligible REC members by trained and supervised surveyors using a well designed questionnaire integrated in smartphones via ODK-collect. The data were analyzed by estimating proportions with 95% Confidence Interval using the EpiInfo software version 7.2.2.6.Findings Out of the 79 ethics committee members reached, 64 (81.01%) accepted to participate including 28 (43.75) female. The result showed that,21 (32.81%) of ethics committee members were not trained in research ethics evaluation including 68.75% not exposed to training on research participants protection during clinical trials. A given fraction of respondent was not aware of the existence of key national regulations (25%) and international guidelines like the Helsinki Declaration (32.81%). Participants identified and ranked their priorities in terms of training needs in research participant’s protection, national text regulating research in Cameroon, evaluations’ procedures of research protocol, organization of research in Cameroon, and protection of participants in research involving the transfer of biological materials. The workshop and e-learning courses were seen to be the main accessible source of training.Conclusion Not all ethics committee members received training on ethical principles regarding research ethics review, review process and monitoring of research protocols, and on ethical issues associated to each study design including clinical trials. These gaps and the needs perceived by participants are to be taken into account when setting up a training program for RECs members on ethical evaluation in Cameroon.

Ethical issues in action-oriented research in Indonesia

2017 ◽  
Vol 24 (6) ◽  
pp. 686-693 ◽  
Author(s):  
Rini Rachmawaty
Keyword(s):  
Research Ethics ◽  
Human Subject ◽  
Ethical Issues ◽  
Human Subjects ◽  
Ethics Committee ◽  
International Standards ◽  
Local Health ◽  
Human Subject Research ◽  
Research Ethics Committee ◽  
Oriented Research

Background: Action-oriented research is one of the most frequent research types implemented to transform community health in Indonesia. Three researchers and 11 graduate students from a developed country in East Asia conducted a fieldwork program in a remote area in South Sulawesi Province. Although the project was completed, whether or not the international standards for human subject research were applied into that study remains unclear. Objectives: This study aimed to examine ethical issues raised from that case, analyze constraints to the problems, and recommend alternatives to protect vulnerable populations from being exploited by local/international researchers. Methods: A problem-solving approach was used in this study. It began with problem identification, evaluation of the action-oriented research goal, investigation of the constraints to the problem, and recommendation of some relevant alternatives to address the central issue. Ethical Consideration: The approval for conducting the action-oriented research that being investigated in this work was only obtained from the Head of local district. Results: Some ethical issues were found in this case. No special protection for this population, no informed consent was obtained from the participants, exposure to social and economic risks, no future benefits for the subjects, and conflict of interests. Lack of control from the local research ethics committee and lack of competence of local researchers on human subject research were considered as the constraints to the problems. Discussion: Creating an independent research ethics committee, providing research ethics training to the local researchers, obtaining written/video consents from underserved populations, and meeting local health needs were recommended alternatives to solve these problems. Conclusion: Indonesian government bodies should reform their international collaborative system on research involving human subjects. Exploitation may not occur if all participants as well as all local and national governing bodies understand the research ethics on human subjects and apply it into their practice.

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