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Research Ethics
Journal Prestige (SJR): 0.249
Number of Followers: 8  

  This is an Open Access Journal Open Access journal
ISSN (Print) 1747-0161 - ISSN (Online) 2047-6094
Published by Sage Publications Homepage  [1174 journals]
  • Principlism and citizen science: the possibilities and limitations of
           principlism for guiding responsible citizen science conduct

    • Authors: Patrik Baard, Per Sandin
      Abstract: Research Ethics, Ahead of Print.
      Citizen science (CS) has been presented as a novel form of research relevant for social concerns and global challenges. CS transforms the roles of participants to being actively involved at various stages of research processes, CS projects are dynamic, and pluralism arises when many non-professional researchers take an active involvement in research. Some argue that these elements all make existing research ethical principles and regulations ill-suited for guiding responsible CS conduct. However, while many have sought to highlight such challenges from CS, few have discussed principles per se providing the foundation for regulations. In this article we will investigate the possibilities of midlevel principlism in guiding responsible CS conduct. Principlism has the potential of accommodating many of the concerns taken to reduce the relevance of existing principles.
      Citation: Research Ethics
      PubDate: 2022-08-03T11:32:58Z
      DOI: 10.1177/17470161221116558
       
  • Ethics review and conversation analysis

    • Authors: Jeffrey P Aguinaldo
      Abstract: Research Ethics, Ahead of Print.
      In this case study, I address the procedural ethics of conversation analysis (CA) and the collection of naturally occurring mundane interactions. I draw from the challenges that emerged from the institutional ethics review of the HIV, health and interaction study (the H2I Study), a CA project that sought to identify the practices through which normative assumptions of HIV and other health conditions are produced in conversations. Consistent with CA’s preference for naturally occurring interactions, the H2I Study collected and analysed everyday telephone calls involving people living with HIV. This article offers practical strategies CA researchers might use to navigate two ethical concerns raised about the collection of naturally occurring mundane interactions. The first questions the merits of collecting naturally occurring mundane interactions. For those unfamiliar with CA, the specific advantages of analysing naturally occurring mundane interactions may not be self-evident. This places an evidentiary burden on CA researchers to warrant the collection of this type of data. To address this concern, I suggest demonstrating in ethics applications the analytic value of CA using publicly available interactions. The second concern questions the use of verbal consent necessary for the collection of naturally occurring mundane interactions. Like most CA research, the H2I Study required flexible informed consent protocols appropriate for spontaneous and unpredictable interactions. Drawing from within and outside the CA literature, I offer three rationales for the use of verbal consent. This article is written as a practical resource for conversation analysts seeking approval from their research ethics board (REB) and for REBs who might be unfamiliar with CA research. This article contributes to a small but growing body of literature that documents not only the kinds of challenges CA researchers encounter from institutional ethics review, but the specific procedural ethics they may employ to secure ethics approval.
      Citation: Research Ethics
      PubDate: 2022-08-02T11:47:38Z
      DOI: 10.1177/17470161221116552
       
  • Can an ethics code help to achieve equity in international research
           collaborations' Implementing the global code of conduct for research
           in resource-poor settings in India and Pakistan

    • Authors: Kate Chatfield, Catherine Elizabeth Lightbody, Ifikar Qayum, Heather Ohly, Marena Ceballos Rasgado, Caroline Watkins, Nicola M Lowe
      Abstract: Research Ethics, Ahead of Print.
      The Global Code of Conduct for Research in Resource-Poor Settings (GCC) aims to stop the export of unethical research practices from higher to lower income settings. Launched in 2018, the GCC was immediately adopted by European Commission funding streams for application in research that is situated in lower and lower-middle income countries. Other institutions soon followed suit. This article reports on the application of the GCC in two of the first UK-funded projects to implement this new code, one situated in India and one in Pakistan. Through systematic ethics evaluation of both projects, the practical application of the GCC in real-world environments was tested. The findings of this ethics evaluation suggest that while there are challenges for implementation, application of the GCC can promote equity in international research collaborations.
      Citation: Research Ethics
      PubDate: 2022-07-07T10:05:41Z
      DOI: 10.1177/17470161221111059
       
  • Informed consent in a tuberculosis genetic study in Cameroon: information
           overload, situational vulnerability and diagnostic misconception

    • Authors: Ali Ibrahim Mohammed-Ali, Eyoab Iyasu Gebremeskel, Emmanuel Yenshu, Theobald Nji, Apungwa Cornelius Ntabe, Samuel Wanji, Godfrey B Tangwa, Nchangwi Syntia Munung
      Abstract: Research Ethics, Ahead of Print.
      Concerns around comprehension and recall of consent information by research participants have typically been associated with low health and research literacy levels. In genomics research, this concern is heightened as the scientific and ethical complexities of genetics research, such as biobanking, genetic susceptibility, data sharing, and incidental findings may be more difficult for potential research participants to understand. However, challenges to research participants’ comprehension of consent information may be compounded by factors beyond health and research literacy levels. To identify factors that may impact research participants’ understanding and recall of consent information, we designed a qualitative study to explore whether participants enrolled in a tuberculosis genetics study (TBGEN-Africa) in Cameroon understood the objectives of the study, the risks and benefits and certain key aspects of the study such as biobanking and data sharing. The results showed that research participants had limited understanding and/or recall of the TBGEN-Africa study goals and methods. Some participants were of the opinion that TBGEN-Africa was not a genetics study because tuberculosis is not an inheritable condition. Factors that may have hindered understanding and/or recall of study information are diagnostic misconception (research participants consider research as part of medical diagnosis), and information overload and situational vulnerability (consent at a time of physical and emotional distress). There is a need for improved practices to support research participants’ understanding of consent information in genetics studies including designing the consent process in ways that minimize psychological distress and diagnostic/therapeutic misconception.
      Citation: Research Ethics
      PubDate: 2022-06-14T07:11:51Z
      DOI: 10.1177/17470161221106674
       
  • Ethical research landscapes in fragile and conflict-affected contexts:
           understanding the challenges

    • Authors: Kelsey Shanks, Julia Paulson
      First page: 169
      Abstract: Research Ethics, Ahead of Print.
      As the prevalence of conflict and fragility continue to rise around the world, research is increasingly heralded as a solution. However, current ethical guidelines for working in areas suffering from institutional and social fragility, insecurity or violent conflict have been heavily critiqued as highly abstract; focussed only on data collection; detached from the realities of academia in the Global South; and potentially extractive. This article seeks to respond to that assessment by spotlighting some of the most prevalent challenges researchers face in the pursuit of ethical working practices. It explores the material and epistemic injustices that often shape and underpin research structures and relationships in these contexts. The paper draws on the authors’ experiences of research in conflict-affected and fragile contexts over the last fifteen years and on workshop discussions with researchers based in fragile and conflict-affected contexts conducted in Amman, Bogotá and Dhaka in 2019-2020. The paper works from the premise that achieving ethical research in fragile spaces is not dependent solely on activity at the site of research, but also on decisions made across the entire ecosystem of a research project. It therefore interrogates the full research landscape, from funding models, to research design (including research topics, partnerships, methods, participant selection, and researcher positionality), to dissemination plans and ethical gatekeeping. The paper critically reflects on inequities in the processes of knowledge production about conflict and fragility and the key ethical challenges that researchers encounter. It highlights the need for further guidance, support and accountability to ensure ethical research practices.
      Citation: Research Ethics
      PubDate: 2022-04-30T12:31:26Z
      DOI: 10.1177/17470161221094134
       
  • Experiences and practices of key research team members in obtaining
           informed consent for pharmacogenetic research among people living with
           HIV: a qualitative study

    • Authors: Nabukenya Sylvia, Ochieng Joseph, Kaawa-Mafigiri David, Munabi Ian, Nakigudde Janet, Nakwagala Frederick Nelson, Barugahare John, Kwagala Betty, Ibingira Charles, Twimwijukye Adelline, Sewankambo Nelson, Mwaka Erisa Sabakaki
      First page: 193
      Abstract: Research Ethics, Ahead of Print.
      This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified.
      Citation: Research Ethics
      PubDate: 2022-02-07T09:07:26Z
      DOI: 10.1177/17470161221076974
       
  • Ethical issues in multilingual research situations: a focus on
           interview-based research

    • Authors: Natalie Schembri, Alma Jahić Jašić
      First page: 210
      Abstract: Research Ethics, Ahead of Print.
      Interview-based research in multilingual situations can present researchers with specific ethical challenges relating to language-based power play, data handling and presentation. Studies indicate favouring the L1 (first language) as an interviewing language may produce better quality data, but external pressures can favour English as the dominant research language. This article examines researcher perceptions and experiences of the ethical consequences of language choice and the practical issues involved. Interviews were conducted with five European researchers working on an interview-based project with experiences of diverse interviewing scenarios. The four moral principles of respect for autonomy, justice, beneficence and non-maleficence were used as a framework for analysis. The analysis revealed a nuanced picture of ethical issues in both L1- and English-oriented scenarios. This included potential misrepresentation and deculturalisation of the data in the former, and language-based power asymmetries in the latter. The findings highlight the importance of documenting ethics-related methodological details of language use, and advocates publication practices favouring the inclusion and foregrounding of L1 data.
      Citation: Research Ethics
      PubDate: 2022-03-16T12:40:11Z
      DOI: 10.1177/17470161221085857
       
  • Ethical considerations in social media analytics in the context of
           migration: lessons learned from a Horizon 2020 project

    • Authors: Jamie Mahoney, Kahina Le Louvier, Shaun Lawson, Diotima Bertel, Elena Ambrosetti
      First page: 226
      Abstract: Research Ethics, Ahead of Print.
      The ubiquitous use of social platforms across the globe makes them attractive options for investigating social phenomena including migration. However, the use of social media data raises several crucial ethical issues around the areas of informed consent, anonymity and profiling of individuals, which are particularly sensitive when looking at a population such as migrants, which is often considered as ‘vulnerable’. In this paper, we discuss how the opportunities and challenges related to social media research in the context of migration impact on the development of large-scale scientific projects. Building on the EU-funded research project PERCEPTIONS, we explore the concrete challenges experienced in such projects regarding profiling, informed consent, bias, data sharing and ethical approval procedures, as well as the strategies used to mitigate them. We draw from lessons learned in this project to discuss implications and recommendations to researchers, funders and university ethics review panels. This paper contributes to the growing discussion on the ethical challenges associated with big social data research projects on migration by highlighting concrete aspects stakeholders should be looking for and questioning when involved in such large-scale scientific projects where collaboration, data sharing and transformation and practicalities are of importance.
      Citation: Research Ethics
      PubDate: 2022-03-16T12:42:50Z
      DOI: 10.1177/17470161221087542
       
  • Reporting incidental findings from non-biological assessments in human
           subject research

    • Authors: Alyssa Pingitore, Ashley Mack, Justin Zhang, Eric G Devine, Jackson Doerr, Caroline Denneen
      First page: 241
      Abstract: Research Ethics, Ahead of Print.
      Incidental findings in research with human participants may have implications for a person’s present health or future health outcomes. Current guidelines focus on methods for handling and reporting incidental findings from biological test data but incidental findings might also arise from non-biological tests. This article presents three examples in which the results from non-biological test data can be predictive of future disease and should be disclosed to research participants. It is intended to increase awareness and facilitate further discussion about the reporting of incidental findings from non-biological data.
      Citation: Research Ethics
      PubDate: 2022-04-18T08:57:13Z
      DOI: 10.1177/17470161221093877
       
  • The intervening effect of the What Being the Parent of a New Baby is
           Like-Revised questionnaire on maternal affect

    • Authors: AH Elise van Beeck, Karen F Pridham, Yvonne Kuipers
      First page: 250
      Abstract: Research Ethics, Ahead of Print.
      The ‘What Being the Parent of a New Baby is Like-Revised’ (WPL-R) is an instrument designed to measure adaptation to parenthood. In the process of pilot testing and validating the WPL-R in a postpartum Dutch population, we became aware of the potentially sensitive nature of the measure. Despite the ethics committee waiving the invasive nature of the measure, we conducted a survey to explore its possible effect on women’s thoughts and emotions by using the Positive And Negative Affect Schedule (PANAS) to measure changes associated with completion of the WPL-R. Two hundred and fifteen questionnaires were returned. Our findings indicated a change in PANAS scores, implying an intervening effect when using the WPL-R, in research. This raises the question of whether it is acceptable to use a questionnaire with postpartum women without any knowledge of the possible effect it may have, even though the ethics committee has approved the study and considers the measure to be non-invasive.
      Citation: Research Ethics
      PubDate: 2022-04-23T06:12:57Z
      DOI: 10.1177/17470161221094929
       
 
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