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1 – 10 of over 38000Judith G. Robinson and Jessica Lipscomb Gehle
Librarians at Eastern Virginia Medical School established a proactive role in research support when the position of Institutional Review Board (IRB) librarian was created in 2001…
Abstract
Purpose
Librarians at Eastern Virginia Medical School established a proactive role in research support when the position of Institutional Review Board (IRB) librarian was created in 2001. Aims to confirm that the IRB librarian assists the school's boards in ensuring human subjects’ protection. Generally, this service is provided in the form of comprehensive searches of medical and other literature and news.
Design/methodology/approach
A program was instigated in order to provide expertise in literature searches to support board members, as they review individual protocols.
Findings
Although serving a relatively small number of users, the program has a major impact on the school's research agenda.
Originality/value
Describes lessons learned, problems encountered, outcomes, and professional gains and lists materials for further reading.
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Julie Bull, Karen Beazley, Jennifer Shea, Colleen MacQuarrie, Amy Hudson, Kelly Shaw, Fern Brunger, Chandra Kavanagh and Brenda Gagne
For many Indigenous nations globally, ethics is a conversation. The purpose of this paper is to share and mobilize knowledge to build relationships and capacities regarding the…
Abstract
Purpose
For many Indigenous nations globally, ethics is a conversation. The purpose of this paper is to share and mobilize knowledge to build relationships and capacities regarding the ethics review and approval of research with Indigenous peoples throughout Atlantic Canada. The authors share key principles that emerged for shifting practices that recognize Indigenous rights holders through ethical research review practice.
Design/methodology/approach
The NunatuKavut Inuit hosted and led a two-day gathering on March 2019 in Happy Valley-Goose Bay, Newfoundland and Labrador, to promote a regional dialogue on Indigenous Research Governance. It brought together Indigenous Nations within the Atlantic Region and invited guests from institutional ethics review boards and researchers in the region to address the principles-to-policy-to-practice gap as it relates to the research ethics review process. Called “Naalak”, an Inuktitut word that means “to listen and to pay close attention”, the gathering created a dynamic moment of respect and understanding of how to work better together and support one another in research with Indigenous peoples on Indigenous lands.
Findings
Through this process of dialogue and reflection, emergent principles and practices for “good” research ethics were collectively identified. Open dialogue between institutional ethics boards and Indigenous research review committees acknowledged past and current research practices from Indigenous peoples’ perspectives; supported and encouraged community-led research; articulated and exemplified Indigenous ownership and control of data; promoted and practiced ethical and responsible research with Indigenous peoples; and supported and emphasized rights based approaches within the current research regulatory system. Key principles emerged for shifting paradigms to honour Indigenous rights holders through ethical research practice, including: recognizing Indigenous peoples as rights holders with sovereignty over research; accepting collective responsibility for research in a “good” way; enlarging the sphere of ethical consideration to include the land; acknowledging that “The stories are ours” through Indigenous-led (or co-led) research; articulating relationships between Indigenous and Research Ethics Board (REB) approvals; addressing justice and proportionate review of Indigenous research; and, means of identifying the Indigenous governing authority for approving research.
Research limitations/implications
Future steps (including further research) include pursuing collective responsibilities towards empowering Indigenous communities to build their own consensus around research with/in their people and their lands. This entails pursuing further understanding of how to move forward in recognition and respect for Indigenous peoples as rights holders, and disrupting mainstream dialogue around Indigenous peoples as “stakeholders” in research.
Practical implications
The first step in moving forward in a way that embraces Indigenous principles is to deeply embed the respect of Indigenous peoples as rights holders across and within REBs. This shift in perspective changes our collective responsibilities in equitable ways, reflecting and respecting differing impetus and resources between the two parties: “equity” does imply “equality”. Several examples of practical changes to REB procedures and considerations are detailed.
Social implications
What the authors have discovered is that it is not just about academic or institutional REB decolonization: there are broad systematic issues at play. However, pursuing the collective responsibilities outlined in our paper should work towards empowering communities to build their own consensus around research with/in their people and their lands. Indigenous peoples are rights holders, and have governance over research, including the autonomy to make decisions about themselves, their future, and their past.
Originality/value
The value is in its guidance around how authentic partnerships can develop that promote equity with regard to community and researcher and community/researcher voice and power throughout the research lifecycle, including through research ethics reviews that respect Indigenous rights, world views and ways of knowing. It helps to show how both Indigenous and non-Indigenous institutions can collectively honour Indigenous rights holders through ethical research practice.
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Brent Harger and Melissa Quintela
Gatekeepers play an important role in research conducted with children and youth. Although qualitative researchers frequently discuss institutional and individual gatekeepers…
Abstract
Gatekeepers play an important role in research conducted with children and youth. Although qualitative researchers frequently discuss institutional and individual gatekeepers, such as schools and parents, little attention has been paid to the role that Institutional Review Boards (IRBs) play in determining who is allowed to research particular populations and the ramifications of these decisions for findings involving children and youth. In order to examine this role, we compare negotiations of two researchers working on separate projects with similar populations with the IRB of a large Midwestern university. In both cases, it is likely that board members used their own personal experience and expertise in making assumptions about the race, social class, and gender of the researchers and their participants. The fact that these experiences are supported by findings across a wide range of IRBs highlights the extent to which qualitative research with children is changed (or even prevented) by those with little knowledge of typical qualitative methodologies and the cultural contexts in which research takes place. While those such as principals, teachers, and parents who are traditionally recognized as gatekeepers control access to specific locations, their denial of access only requires researchers to seek other research sites. IRBs, in contrast, control whether researchers are able to conduct research at any site. Although they wield considerably more control over research studies than typical gatekeepers, the fact that they are housed in the institutions at which academic researchers work also means that we can play a role in their improvement.
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Marleah Blom and Miranda D’Amico
This chapter centers on practices of Review Ethics Board (REBs) as they may impact academic freedom for faculty members acting as participants in research. A case example is…
Abstract
This chapter centers on practices of Review Ethics Board (REBs) as they may impact academic freedom for faculty members acting as participants in research. A case example is provided, which highlights the authors’ experience applying for ethics clearance to conduct a qualitative research study. While the study was classified as minimal risk and received ethics clearance from the researchers’ host institution, additional research ethics applications were required from the higher education settings identified, before being able to recruit participants. In addition to pressing timelines, extra workload and the coordination of different requirements for each institution, not all REBs permitted faculty members the option to reveal their identity and their beliefs on pedagogical practices. This particular experience with the ethics review process elicited questions centering on research ethics committees’ practices in terms of (a) providing opportunities for faculty members, as participants in research, to freely share information about their beliefs and teaching practices as well as (b) infringing on faculty members’ autonomy and rights to intellectually express, share and take ownership of their personal beliefs and pedagogical approaches to teaching in higher education.
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This paper aims to fill gap in the literature and explore policy options for resolving the problems of accountability by framing three research questions. The research questions…
Abstract
Purpose
This paper aims to fill gap in the literature and explore policy options for resolving the problems of accountability by framing three research questions. The research questions are (i) whether certain elements of Scott’s (2014) institutional pillars attenuate (accentuate) corporate and public accountability; (ii) whether the presence of ruling party-affiliated enterprises (RPAEs) create an increase (decrease) in the degree of corporate (public) accountability; and (iii) whether there is a particular form of ownership change that transforms RPAEs into public investment companies.
Design/methodology/approach
Using a qualitative research methodology that involves term frequency and thematic analysis of publicly available textual information, the paper examines Mechkova et al.’s (2019 forms of government accountability. The paper analyzes the gaps between the de jure and de facto accountability using the institutional pillars framework.
Findings
The findings of the paper are three. First, there are gaps between de jure and de facto in all three (vertical, horizontal and diagonal) forms of government (public) accountability. Second, the study finds that more than three fourth of the parties that contested the June 2021 election did have regional focus. They did not advocate for accountability. Third, Ethiopia’s RPAEs are unique. They have regional focus and are characterized by severe forms of agency and information asymmetry problems.
Research limitations/implications
The main limitation of the paper is its exploratory nature. Extending this research by using cross-country data could provide a more complete picture of the link between corporate (public) accountability and a country’s institutional pillars.
Practical implications
Academic research documents that instilling modern corporate (public) governance standards in the Sub Sahara Africa (SSA) region has shown mixed results. The analysis made in this paper is likely to inform researchers and policymakers about the type of change that leads to better corporate (and public) accountability outcomes.
Social implications
The institutional change proposed in the paper is likely to advance the public interest by mitigating agency and information asymmetry problems and enhancing government accountability. The changes make the enterprises investable, save scarce jobs, enhance diversity and put the assets in RPAEs to better use.
Originality/value
To the best of the authors’ knowledge, this is the first paper that uses the institutional pillars analytical framework to examine an SSA country's corporate (public) accountability problem. It demonstrates that accountability is a domestic and a (novel) traveling theory. The paper identifies the complexity of resolving the interlock between political institutions and business enterprises. It theorizes that it is impossible to instill modern corporate (public) accountability standards without changing regulatory, normative and cultural cognitive pillars of institutions. The paper contributes to the change management and public interest literature.
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The purpose of an oversight structure or institution is to protect human subjects from research that would pose unacceptable dangers or deny human rights. Review boards provide an…
Abstract
The purpose of an oversight structure or institution is to protect human subjects from research that would pose unacceptable dangers or deny human rights. Review boards provide an independent assessment of research proposals. This additional level of scrutiny is meant to provide an additional level of protection for human subjects. However, oversight of human subject research, as currently carried out in the bureaucratic, rule‐based, clinically‐biased American system, is too cumbersome with regard to online research. In addition, it is not conducive to the training of ethical Internet researchers. Internet research differs from traditional human subject research in many ways, and the oversight rules governing traditional research do not easily relate to the complexities of conducting research online. Online researchers do not oppose the foundational principles of non‐maleficence (avoiding harm) and autonomy, nor do they reject the ideals of informed consent and confidentiality, nevertheless, they face practical dilemmas in attempting to follow these principles and apply these ideals in the various Internet domains. The current oversight system is ill‐equipped to assist. A conservative response to this problem of fit might entail adjustments to the oversight system that, in the case of the American system, would entail modifications to the Common Rule and Institutional Review Boards (IRBs). I will argue in this paper, instead, that re‐structuring is needed to allow more oversight authority for Internet researchers. I will utilize Consequentialism and Virtue Ethics in making this case.
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George T. Duncan and Sanda Kaufman
The U.S. Census Bureau, health data providers, and credit bureaus are information organizations (IOs). They collect, store, and process large sets of sensitive data on…
Abstract
The U.S. Census Bureau, health data providers, and credit bureaus are information organizations (IOs). They collect, store, and process large sets of sensitive data on individuals, households, and organizations. Storage, processing, and dissemination technologies that IOs employ have grown in capability, sophistication, and cost‐effectiveness. These technologies have outpaced the design and implementation of procedures for protecting data in transfer from primary data provider to IO and from IO to data user. On the one hand, it is necessary to protect the confidentiality of such data; on the other hand, it is necessary to protect the accessibility to the data by users, including researchers and analysts. Conflicts ensue in the two corresponding arenas: between the IO and data providers concerned with inadequate privacy and confidentiality protection; and between the IO and data users who find their access to data restricted. In this article third‐party mechanisms for managing disputes in the privacy and information area are both theoretically justified and their empirical manifestations examined The institutional mechanisms considered include privacy and information clearinghouses, a “Better Data Bureau,” a privacy information advocate, a data ombuds, a privacy mediator, an internal privacy review board, and a data and access protection commission. Under appropriate circumstances, these arrangements promise a more flexible and responsive resolution of the conflict between privacy/confidentiality and legitimate information access than is possible through legislative action and administrative rulings alone.
I want to read the controversies and scandals surrounding Institutional Review Boards (IRBs) within a critical pedagogical, discourse. Ethics are pedagogies of practice. IRBs are…
Abstract
I want to read the controversies and scandals surrounding Institutional Review Boards (IRBs) within a critical pedagogical, discourse. Ethics are pedagogies of practice. IRBs are institutional apparatuses that regulate a particular form of ethical conduct, a form that may be no longer workable in a transdisciplinary, global, and postcolonial world. I seek a progressive performative cultural politics that enacts a performance ethics based on feminist, communitarian assumptions. I will attempt to align these assumptions with the call by First and Fourth World scholars for an indigenous research ethic (Smith, 1999; Bishop, 1998; Rains, Archibald, & Deyhle, 2000). This allows me to criticize the dominant biomedical and ethical model that operates in many North American universities today. I conclude with a preliminary outline of an indigenous, feminist, communitarian research ethic. This ethic has two implications. It would replace the current utilitarian ethical model that IRBs utilize. It argues for a two-track, or three-track IRB model within the contemporary university setting.
Conducting research with children and youth has become increasingly challenging in recent years. At times these difficulties come in the form of restrictions by Institutional…
Abstract
Conducting research with children and youth has become increasingly challenging in recent years. At times these difficulties come in the form of restrictions by Institutional Review Boards, funding agencies, and parents. Additionally, changes in youth culture and behavior, specifically regarding online activities and digitally mediated communications, impact the access that researchers have to children and youth communities in significant ways. In this chapter, I propose that the use of an emerging methodological technique, digital ethnography, may provide researchers with new data sources on children and youth culture. Digital ethnography combines ethnographic techniques of observation, participation, and interview with content analysis to collect rich data about online behavior, norms, expectations, and interactions. This technique not only provides researchers with sources of data that allow insight into youth culture by acknowledging the increasing importance of online and digital interactions in youth culture but may also address some of the concerns raised by IRBs and other interested parties about conducting research with children and teens. This chapter provides practical and ethical considerations of this method, as well as a discussion of limitations of data collection and access as it highlights new ways of studying youth culture, using emerging data collection techniques in innovative research projects.
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Carole Collins-Ayanlaja, Warletta Brookins and Alison Taysum
Superintendents’ agency in the US is shaped by governance systems within education systems. These Education Governance Systems have been in a state of flux and experienced…
Abstract
Superintendents’ agency in the US is shaped by governance systems within education systems. These Education Governance Systems have been in a state of flux and experienced turbulence for twenty years. The professional challenge this research addresses is how do 14 credentialed educational professional African American women superintendents with doctorates and track records of school improvement, navigate the turbulence to empower families, and Empower Young Societal Innovators for Equity, Renewal (EYSIER), Social Mobility, and Peace.
This chapter identifies three aspects of a theory of knowledge to action to emerge from the empirical evidence presented. First, African American women superintendents need to know how to access policy and legislation, how to stay up to date with policy and need to be empowered to challenge policy. Policy has the back of African American women fighting institutionalised racism. Second, African American women superintendents need role models, and mentors with wisdom who can create proactive and mobilising networks across the state and the nation to advocate for and to support the teachers’ and leaders’ professional learning to be the best teachers, leaders and superintendents they can be. Finally, the African American women superintendents who have been self-selecting, or identified as potential future superintendents by current superintendents and schoolboards, need to be part of succession planning that transcends the short elected lives of district school boards. Newly incumbent African American women superintendents need to be empowered by Education Governance Systems to enable them to deliver on their manifestos and track records of outstanding school improvement with the impact strategies they were employed to implement. The impact strategies include promoting high-quality home–school engagement and ensuring all students learn how to learn, are culturally sensitive, ask good questions and solve problems as Young Societal Innovators for Equity and Renewal. The chapter recommends a network of African American women superintendents implements this theory of knowledge to action and that their work is documented, and if successful in optimising students’ learning, and outcomes, disseminated to build capacity for EYSIER.
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