BackgroundEngagement of people with lived experience and members of the public is an ethically and scientifically essential component of health research. Authentic engagement means they are involved as full partners in research projects. Yet engagement as partnership is uncommon in practice, especially during priority-setting for research projects. What is needed for agenda-setting to be shared by researchers and people with lived experience and/or members of the public (or organisations representing them)? At present, little ethical guidance exists on (...) this matter, particularly that which has been informed by the perspectives of people with lived experience and members of the public. This article provides initial evidence about what they think are essential foundations and barriers to shared decision-making in health research priority-setting and health research more broadly.MethodsAn exploratory, qualitative study was conducted in 2019. 22 semi-structured interviews were performed with key informants from the UK and Australia.ResultsThree main types of foundations were thought to be essential to have in place before shared decision-making can occur in health research priority-setting: relational, environmental, and personal. Collectively, the three types of foundations addressed many (but not all) of the barriers to power sharing identified by interviewees.ConclusionsBased on study findings, suggestions are made for what researchers, engagement practitioners, research institutions, and funders should do in their policy and practice to support meaningful engagement. Finally, key international research ethics guidelines on community engagement are considered in light of study findings. (shrink)

"A new framework has been established across the United Kingdom with four key priorities. These priorities include helping patients receive a final diagnosis quickly, increasing rare disease awareness among healthcare professionals, better coordination of care, and improving access to specialist care, treatments, and drugs (DHSC, 2021).".

This chapter presents a methodology for doing research inclusively with autistic people with profound learning disabilities. The purpose of the methodology is to learn about the views and experiences of this group within the context of their everyday lives. The methodology involves in-depth participatory work, a guiding phenomenological framework, Ashworth’s Lifeworld Fractions (2016), and a circular process of fieldwork and analysis. It is argued that this represents an inclusive process as it promotes dialogue, being-with participants, and an approach (...) where participants’ experiences and circumstances guide a study’s methods, focus and theoretical perspectives. Described are the methodology’s phenomenological and inclusive underpinnings, as well as an example of the methodology in practice as drawn from a project that sought the experiences of an autistic adult with profound learning disabilities. The chapter concludes with a reflection on the ways in which the methodology promotes involvement in research of autistic people with profound learning disabilities, as well as its limitations. (shrink)

Ce bilan critique explore la question de la citoyenneté des personnes ayant une déficience intellectuelle ainsi que son expression dans les recherches sur l’inclusion. Le point de vue déductif adopté est celui des principes généraux énoncés dans l’article 3 de la CDPH. Le bilan utilise le cadre d’analyse proposé par Arksey et O’Malley. Sept bases de données ont été explorées pour trouver des articles de revues expertisés par des pairs datant de 2005 à 2019. Nos principales conclusions sont les suivantes: (...) le terme citoyenneté est rarement mentionné ou rarement discuté explicitement dans les articles; les articles mettent en évidence un grand nombre de dimensions diverses étroitement liées à l’exercice de la citoyenneté. Dans les articles, la citoyenneté est liée à la participation, à l’autonomie, à la prise de décision, à l’autodétermination et à l’intégration dans la société, mais les articles révèlent également des violations des droits et des obstacles à la participation à la société; une plus grande attention doit être accordée à la conceptualisation et à l’exploration de la citoyenneté des personnes ayant une déficience intellectuelle.Implications pour des recherches ultérieures. La recherche doit mettre plus l’accent sur la compréhension du concept de citoyenneté ainsi qu’à son exercice afin que les personnes ayant une déficience intellectuelle aient une chance réelle de devenir des partenaires égaux dans la société et dans la recherche. (shrink)

The Coronavirus pandemic has undoubtedly caused significant disruption in how higher education operates, both in terms of the processes of teaching and learning, and research cultures. In light of these challenges and necessary changes, there is a clear opportunity for rethinking cultures, specifically those where qualitative person-focussed research is carried out and, by so doing, promote inclusive research practices. In this chapter, written by three disabled academics, we contend that, for such inclusive research practices (...) to emerge, disabled people’s experiences of conducting and participating in research, as well as being in academia in general, need to be considered. We demonstrate that disabled people’s experiences of disadvantage and how they respond to exclusionary barriers faced within academia offer important insights and facilitate innovation for building inclusive research cultures post-pandemic. Empirical data supporting our argument comes from two focus groups conducted during the pandemic with seven disabled people, including the authors of this chapter. These focus groups explored the barriers that disabled people encounter when conducting and participating in academic research. Our suggestions for how to implement inclusive research practices going forward are grounded in these narratives. (shrink)

Gilbert et al. argue that the concerns about the influence of Deep Brain Stimulation on – as they lump together – personality, identity, agency, autonomy, authenticity and the self are due to an ethics hype. They argue that there is only a small empirical base for an extended ethics debate. We will critically examine their claims and argue that Gilbert and colleagues do not show that the identity debate in DBS is a bubble, they in fact give very little evidence (...) for that. Rather they show the challenges of doing research in a field that is stretched out over multiple disciplines. In that sense their paper is an important starting point for a discussion on methodology and offers valuable lessons for a future research agenda. (shrink)

Society 5.0 envisions a future where technology and humanity integrate to address societal concerns. In an era marked by significant technological advancements, particularly in artificial intelligence, it is vital to uphold the core values of compassionate care and human connection. While the healthcare sector is central to this transformation, the prevailing research ethics frameworks remain dominated by Western individualism and positivism. This conceptual paper aims to establish a case for integrating African research canons—ujamaa, utulivu, kujitoa, uhaki, and ukweli—into (...) bioethical discourse to create a more inclusive, culturally relevant framework. As a conceptual review, this paper analyses existing Afrocentric paradigms and uses the Bachelor of Clinical Medical Practice (BCMP) curriculum as an illustrative case study of decolonised ethics in practice. Incorporating Ubuntu and specific African research canons challenges the Western-centric status quo, fostering a research environment that prioritises communal well-being and harmony. We can contribute to humanising healthcare by integrating these Afrocentric values, working towards creating a society that is more inclusive and compassionate. The inclusion of African research canons may lead to inclusive and culturally relevant research ethics by shifting the emphasis from Western individualism to a more holistic and human-centred approach. (shrink)

Meaningful and long-lasting progress in equity, diversity, and inclusion (EDI) continue to elude academics, practitioners, and policymakers. Extending Chater & Loewenstein's arguments to the EDI space, we argue that, despite conventional focus on individual-level solutions (i-frame), increasing EDI also requires a systemic focus (s-frame). We thus call for the design, testing, and implementation of multipronged s-frame interventions.

In this chapter, I share my perspective on the role that we, researchers, play when developing a community-centered research project. Through my autobiographical narrative, I share experiences and lessons learned over two decades as a social scientist, facilitating and implementing diverse methodologies that have been oriented towards the development of the organizational skills of communities and their role as protagonists in identifying solutions for their own health problems.

We highlight exclusionary practices in management research, and demonstrate through example how a more inclusive management literature can address the unique contexts of persons with disabilities, a group that is disadvantaged in society, globally. Drawing from social psychology, disability, self-employment, entrepreneurship, and vocational rehabilitation literatures, we develop and test a holistic model that demonstrates how persons with disabilities might attain meaningful work and improved self-image via self-employment, thus accessing some of the economic and social-psychological benefits often unavailable to (...) them due to organizational-employment barriers. Our longitudinal study provides evidence of the self-image value of ‘doing’ in self-employment, highlighting the potential to reduce stigma and improve generalized self-efficacy and self-esteem. Implications for self-image theory, entrepreneurship training and development, and public policy related to persons with disabilities are discussed. (shrink)

This paper argues that much of the growing body of research that claims to address inclusion for disabled students is not new, but rather a re-articulation of old ideas which fail to do sufficient justice to the demands of the 'new times,. The paper concludes with an outline of a research agenda that is more comprehensive in scope and more finely tuned into the politics of 'identity'.

An important contribution of Christian ethics in the pluralistic world of the twenty-first century is to emphasize inclusivity. Rather than promoting the interests of certain groups at the expense of the most vulnerable, society does well to prioritize ways forward that benefit all. For stem cell research, inclusivity entails benefiting or at least protecting the beneficiaries of treatment, the sources of materials, and the subjects of research. Adult stem cells are already benefiting many ill patients without causing harm, (...) and select adult cells may prove even more beneficial in the future. Other types of stem cells require other bodily materials such as eggs and somatic cells that should be obtained without unduly harming those who provide them. Research subjects, especially the most vulnerable, require protection as well. Should human embryos be included among them? Considerations of location, formation, individuation, and intention are here examined. Ultimately, for safety reasons as well as workability, pluripotency, and compatibility, relatively new types of pluripotent stem cells, especially induced pluripotent stem cells, warrant special priority according to an inclusive ethics. (shrink)

Queer Inclusion in Teacher Education explores the challenges and promises of building queer inclusive pedagogy and curriculum into teacher education. Weaving together theory, research findings, and practical "how-to" strategies and materials, it fills an important gap by offering a clear roadmap and resources for influencing the knowledge, beliefs, and actions of faculty working with pre-service teachers. While the book has implications for policy change, most immediately, readers will feel empowered with ideas for faculty development they can implement in (...) their own teacher education programs. Looking at both the politics and practices of teacher education and the ways in which queer issues manifest in schools, it is hopeful in suggesting that if teachers and pre-service teachers can critically reflect on homophobia and heteronormativity, they can begin to think about and relate to queer youth in a different, more positive and inclusive way. A Companion Website [http: //queerinclusion.com] with additional activities and materials for teacher educators and faculty development and a practical guide enhances the usefulness of the book. (shrink)

The ethical inclusion of adults with intellectual and developmental disabilities (IDD) in research entails practices that will enhance their autonomy without exposing them to undue risk. Although inclusive research involving people with IDD responds to many shortcomings of more traditional research approaches, this chapter focuses instead on how best to conduct traditional research. The author focuses on the process of informed consent and argues for the importance of accommodations to support adults with IDD. The topics (...) discussed include: the development of research ethics in response to the exploitation of vulnerable populations; the ethical tensions associated with research involving people with IDD (including the concept of vulnerability, decision-making capacity, and informed consent); the ethical argument for providing accommodations; and well-informed strategies for accommodating adults with IDD throughout the research consent process. The purpose of the chapter is to convince researchers who use traditional research paradigms of the ethical imperative to provide accommodations that reduce the context-specific vulnerability of adults with IDD during the consent process. (shrink)

This reflection outlines the development of a Terms of Reference (ToR) for equity, diversity, and inclusion (EDI) in a 6-year energy transitions research project spanning 11 institutions and involving 100 researchers across science, technology, engineering and mathematics (STEM), social science, and humanities disciplines. This multi-disciplinary and multi-institutional project involves partnerships with industry and civil society organizations, attempts to center justice-oriented research, and includes communities and users in knowledge co-production in a field of research and practice known for (...) exclusion and marginalization. An EDI ToR is a guiding document that outlines the shared understandings and practices necessary to foster a safe, equitable, and inclusive research environment. Here we describe how 42 researchers across all career stages and 5 time zones co-authored an EDI ToR that reflects the project’s context and goals while attempting to make the writing process inclusive. Using autoethnography, we reflect on the process of developing this ToR and evaluate its effectiveness in meeting project needs, fostering shared values, and supporting the education and training of diverse early career researchers. We found that, given the complexity of the project, our approach offered a valuable pathway for the team to reflect on shared values by encouraging early and continuous dialog and alignment among researchers. The ToR offered a compass to help researchers make decisions ethically and inclusively. Our contribution is to demonstrate how an EDI ToR development process can foster reflexivity and offer space to address the tensions that inevitably arise within research teams and tensions between the team’s needs and justice-oriented energy research in practice. Drawing on our findings, we recommend that other research teams and funders embed EDI goals, benchmarks, and commitments into their grant proposals and that they hold small-group discussions throughout the EDI ToR development and implementation phases to allow for reflection and iteration. (shrink)

This collection presents policy and research that addresses digital inequalities, access, and skills, from multiple international perspectives. With a special focus on the impact of the COVID-19, the collection is based on the 2021 Digital Inclusion, Policy and Research Conference, with chapters from both academia and civic organizations. The COVID-19 pandemic has changed citizens’ relationship with digital technologies for the foreseeable future. Many people’s main channels of communication were transferred to digital services, platforms, and apps. Everything ‘went online’: (...) our families, friends, partners, health, work, news, politics, culture, arts and protesting. Yet access to digital technologies remained highly unequal. This brought digital inclusion policy and research to the fore, highlighting to policymakers and the public the ‘hidden’ challenges and impacts of digital exclusion and inequalities. The cutting-edge volume offers research findings and policycase studies that explore digital inclusion from the provision of basic access to digital, via education and digital literacy, and on to issues of gender and technology. Case studies are drawn from varied sources including the UK, Australia, South America, and Eastern Europe, providing a valuable resource in the pursuit of social equity and justice. ​ This is an open access book. (shrink)

Inclusive businesses that combine profit making with social impact are claimed to hold the potential for poverty alleviation while also creating new entrepreneurial and innovation opportunities. Current research, however, offers little insight on the processes through which for-profit business organizations introduce social innovations that can profitably create social impact. To understand how social innovations emerge and become sustained in business organizations, we studied a telecom firm in Kenya that successfully extended financial services across the country through a number (...) of mobile banking innovations. Our qualitative analysis revealed the strong role of being embedded in local networks and structures for initiating and implementing social innovations. Strong embeddedness enhanced the pragmatic and ethical imperative for internalizing social issues, but also provided access to diverse resources for implementing and legitimizing social innovations. However, hybridization processes that emphasized social issues introduced organizational tensions by increasing goal diversity and requiring adapting organizational processes and structures. The case shows how developing a mission-driven identity enabled the sustenance of social innovations by providing a meta-narrative that bridged goal diversities and rationalized organizational change. (shrink)

This chapter contains sections titled: * The Beneficiaries of Treatment * The Sources of Materials * The Subjects of Research * Conclusion * Notes * References * Further Reading.

Focusing on stakeholder inclusion, this article investigates the consequences of implementing the responsible research and innovation framework in a public funding regime. I use a Norwegian transdisciplinary project as a case study, demonstrating how the Research Council of Norway relies heavily on the assumption that stakeholders will pay for further development of the project as long as they are appropriately engaged. In analysing my case, I show how a real risk exists for a project that can potentially deliver (...) value to society and address the grand challenges of our time ends up as waste. I refer to this as 4E Waste which I break into four types: Economic Waste – when money put into the initial project becomes “worthless” because the research is not followed up, Eidetic Waste – where knowledge is lost when the community of practice that is building the novel understanding dissipates, Ecological Waste – when polluting practices associated with current production methods prevail, and Ethical Waste – when the potential enterprise becomes a missed chance to do something good. Keywords: RRI; stakeholder inclusion; funding policy; Mode 2 research. (shrink)

mHealth devices and applications, with their wide accessibility and ease of use, have the potential to address persistent inequities in biomedical research participation. Yet, while mHealth technologies may facilitate more inclusive research participation, negative features of some unregulated use in research — misleading enrollment practices, the promotion of secondary mHealth applications, discriminatory profiling, and poorer quality feedback due to dependencies on biased data and algorithms — may threaten the trust and engagement of underrepresented individuals and communities. (...) To maximize the participation of currently disenfranchised groups, those involved in unregulated mHealth research must become aware of potential risks, adopt targeted education policies, audit algorithms for hidden biases, and engage citizen scientists and other community members to identify and forestall possible harms. (shrink)

This book presents and discusses an approach to action research to help reverse discriminatory and exclusionary practices in education. Insider accounts of action research will help challenge assumptions about the limits of inclusive education, and offer examples of how change can be realistically achieved through processes of collaboration and participation. Written by a team of practitioner researchers drawn from a wide range of schools and services, this book addresses a wide range of real-life situations by exploring ways (...) in which teachers have tackled inequalities in the school environment through action research based on principles of equality and democracy. These include: * the co-ordination of services for minority ethnic groups, including refugee and asylum seeking children * young children with autism working with peers in the literacy hour * action research and the inclusion of gay students * developing the role of learning support assistants in inclusion * reducing exclusion of children with challenging behaviour * listening to the voices of young people with severe learning difficulties * developing links between special and mainstream schools * challenging marginalising practices in Further Education. (shrink)

This book presents and discusses an approach to action research to help reverse discriminatory and exclusionary practices in education. Insider accounts of action research will help challenge assumptions about the limits of inclusive education, and offer examples of how change can be realistically achieved through processes of collaboration and participation. Written by a team of practitioner researchers drawn from a wide range of schools and services, this book addresses a wide range of real-life situations by exploring ways (...) in which teachers have tackled inequalities in the school environment through action research based on principles of equality and democracy. These include: * the co-ordination of services for minority ethnic groups, including refugee and asylum seeking children * young children with autism working with peers in the literacy hour * action research and the inclusion of gay students * developing the role of learning support assistants in inclusion * reducing exclusion of children with challenging behaviour * listening to the voices of young people with severe learning difficulties * developing links between special and mainstream schools * challenging marginalising practices in Further Education. (shrink)

Throughout scientific history, there have been cases of mainstream science dismissing novel ideas of less prominent researchers. Nowadays, many researchers with different social and academic backgrounds, origins and gender identities work together on topics of crucial importance. Still, it is questionable whether the privileged groups consider the views of underprivileged colleagues with sufficient attention. To profit from the diversity of thoughts, the scientific community first has to be open to minority viewpoints and epistemically include them in mainstream research. Moreover, (...) the idea of inclusive science poses stronger requirements than the paradigm of open science. We argue that the concept of integration of different opinions is insufficient because the process of integration assumes adjusting oneself to the majority view and fitting into the dominant paradigm while contributing only with smaller amendments. Epistemic inclusion, on the other hand, means dynamically changing the research paradigm during the interaction with diverse methods and hypotheses. The process of inclusion preserves marginalized views and increases epistemic justice. (shrink)

When “digitalization” meets “aging,” to understand the theoretical updates and value reconstruction of concepts like corporate digital responsibility and age inclusion, research should be conducted from the perspective of age-inclusive digital responsibility. We adopt a mixed research method to comprehensively analyze age-inclusive digital responsibility. The study results indicate that the formation of age-inclusive digital responsibility arises from the intersectional evolution of corporate digital responsibility and age-inclusive management while facing ethical dilemmas in four areas: the (...) digital divide, digital trust, digital exclusion, and digital addiction. It presents a completely new theoretical connotation from four levels: society, business, individual, and technology, and has important impacts on age-friendly society, organizational culture, and digital recognition. The research constructs a governance system from four aspects. These results provide theoretical guidance for eliminating the digital divide and achieving shared digital responsibility, as well as motivation for companies to engage in responsible digital innovation. (shrink)

The science, technology, engineering, and mathematics (STEM) classroom is an ideal site for implementing community-based ethics resources. Doing so fulfills programmatic requirements in the social reality of science and demonstrates increased applicability of science concepts to issues of immediate community concern. This chapter elaborates on the Re-envisioning Ethics Access and Community Humanities (REACH) initiative at Salisbury University, its community research methodology, and the implementation of community-sourced ethics cases in the biology classroom. Preliminary student and instructor feedback is summarized. As (...) opposed to using more traditional ethics resources, such as cases sourced from the national media or case-based ethics readers, the use of community-based cases demonstrates promise in increasing student engagement in discussion, the applicability of course content, and a sense of the social importance of science in addressing contemporary ethics issues. We end with future implications of this pedagogical approach for revising ethics instruction in the STEM classroom. (shrink)

The Sustainable Development Goal of the United Nations related to reduced inequalities calls for greater economic inclusion of the poor. Yet, how business leaders grant economic opportunities and development to the poor is significantly under-researched. Extending burgeoning responsible leadership theory that promotes paradox-savvy leadership for building inclusive ventures through various actors, this study introduces new concepts of inclusive leadership that foster the economic inclusion of the poor from Amartya Sen’s capability approach perspective. By studying how leaders include the (...) poor in social businesses, we provide a fresh perspective of inclusive leadership as a personalized empowering cycle of economic–social–economic inclusion to close the gaps between the rich and poor in business and society. This perspective provides new territories of diversity and inclusion research for reduced inequality. (shrink)

This book shares innovative approaches to effectively engage students and faculty working in research labs, lab-based classrooms and courses to build inclusive ethical cultures. The frameworks and approaches presented move beyond traditional research ethics training to strengthen the ethical culture in research labs. The chapters in the book showcase best practices and approaches to embedding educational interventions in courses, research labs and departments. The book is based on the two-day workshop “Building Inclusive Ethical Cultures (...) in STEM” (April 23-24, 2021). Moving beyond the two-day conference that inspired this collected volume, the various chapters address questions like: What are approaches and tools to integrate ethics education in STEM effectively? How can STEM ethics education be improved? What can researchers do to build more inclusive research environments? How can meaningful discussions about ethics be effectively integrated into STEM courses, research labs, and workplace environments? While each chapter takes a different perspective and is located in its respective context, the contributions are united by the goal of effectively including ethical reflection in STEM education. Instructors from both four-year and two-year colleges who teach STEM and lab-based STEM courses; young principal investigators/junior faculty who are in the process of building their research groups; departmental chairs interested in programmatic approaches for improving mentoring, research ethics education, and the research culture of their department, will find this work to be a very valuable resource in their daily practice. (shrink)

Pregnant people are often listed among groups that have been excluded from research on the basis of perceived vulnerability, to the detriment of the entire class. Lack of research among pregnant pe...

People with severe learning disability are particularly difficult to include in the research process. As a result, researchers may be tempted to focus on those with learning disability who can be included. The problem is exacerbated in this field as the political agenda of inclusion and involvement is driven by those people with learning disability who are the higher functioning. To overcome this we should first detach the notion of consent from ideas about autonomy and think instead of it (...) as a way to avoid wronging others; this fits the original historical use of consent in research. This allows us to think in terms of including participants to the best of their abilities rather than in terms of a threshold of autonomy. Researchers could then use imaginative ways to include the least able and to ensure they are not wronged in research or by exclusion from it. (shrink)

Research on mental health and illness presents a variety of unique ethical challenges. This article argues that institutional review boards (IRBs) can improve their reviews of such research by including the perspectives of individuals with the condition under study either as members of the IRB or as consultants thereto. Several reasons for including the perspectives of these individuals are advanced, with the discussion organized around a hypothetical case study involving the assessment of a novel talk-therapy modality. Having made (...) this case, the article goes on to explain how to implement the idea by building on a recent proposal by Rebecca Dresser, who argues in a number of publications for the inclusion of former research participants in the IRB review process. Finally, concerns about protecting reviewer and consultant confidentiality are addressed. (shrink)

In Swedish schools, the so-called ‘Participation Model’ is used to observe and analyse participation, with the intention of supporting an inclusive learning environment. While this model is widely promoted by government agencies, its theoretical alignment to the concept(s) of inclusion is not established. This article therefore compares and maps the six aspects of participation within the Participation Model (i.e. belonging, accessibility, interaction, autonomy, involvement and acceptance) with a hierarchically ordered set of commonly occuring definitions of inclusive education (ranging (...) from the lowest level, placement, to the highest, community). The Participation Model was found to provide necessary and sufficient conditions for the lower levels of inclusion, as well as necessary conditions for the higher levels of inclusion. However, we show that the model suffers from construct underrepresentation and outline a few possible solutions intended to increase the theoretical alignment between the Participation Model and the higher levels of inclusive education. Finally, we suggest directions for further research. (shrink)

Building on social information processing theory and social exchange theory, this research advances the emerging concept of work engagement and inclusive leadership. Surprisingly, there is no study linking work engagement and inclusive leadership style in the setting of multiple organizations in China. The main purpose of this study is to identify the effective leadership style affecting work engagement directly and indirectly through psychological safety. The trust in leader further moderated the direct relationships. Using multi-source data of 390 (...) responses from leaders-subordinates dyads working in 20 Chinese companies (which include textile, manufacturing, construction, and trading), this study tested how inclusive leadership increased the work engagement of their subsequent subordinates. The mediating role of psychological safety and moderating role of trust in leader therein. The findings introduced an interactive motivational framework that revealed the positive influence of inclusive leadership on the work engagement of subordinates. Further, psychological safety mediated the direct relationship between inclusive leaders and work engagement. The role of trust in leader strengthened the direct relationship of inclusive leadership with psychological safety and work engagement. This is among the first studies to integrate inclusive leadership, psychological safety, trust in leader, and work engagement into a single interactive framework. Further, it provides empirical evidence in the context of predicting and increasing the work engagement of subordinates. (shrink)

_Work-Life Research in the Asia–Pacific: Implications for Justice, Equity, Diversity, and Inclusion_ gives readers a window into the work-life dynamics of the most populous and diverse region in the world. Written by scholars from the Asia–Pacific, it details research on the challenges that workers in this region face when technological advancement and societal values conflict with gender equity and worker well-being. It gives voice to some of the many workers who experience these conflicts daily and insight into how (...) they navigate them with the assistance or interference of technology, family, organizations, society, and government. For readers who might normally approach issues of diversity, equity, inclusion, and justice from a Western perspective, this book provides alternative perspectives and a greater understanding of how the broader social, economic, and political environments of the region shape work-life trends. While no single volume can comprehensively cover the work-life experiences of those in the region, this book provides readers with a place to start their journey of understanding, with nine snapshots into the region and its work-life perspectives. (shrink)

As genetic and genomic research has progressed since the sequencing of the human genome, scientists have continued to struggle to understand the role of genetic and socio-cultural factors in racial and ethnic health disparities. Recognition that race and ethnicity correlate imperfectly with differences in allele frequency, environmental exposures, and significant health outcomes has made framing the relationship between genetic variation, race, ethnicity, and disease one of the most heated debates of the genome era. Because racial and ethnic identities reflect (...) a complicated mix of social and genetic factors, critics have argued that use of racial and ethnic categories as analytical variables in biomedical research lacks rigor, leads to potentially dangerous stereotyping in medical practice, and sends harmful messages of innate racial difference to the broader public.Concerns over the current lack of diversity in human genetic and genomic studies have developed in parallel to discussions of the appropriate use of racial and ethnic categories during the research process. (shrink)

The embedding and promotion of social change is faced with aparadoxical challenge. In order to mainstream an approach to socialchange such as responsible research and innovation and makeit into a practical reality rather than an abstract ideal, we need tohave conceptual clarity and empirical evidence. But, in order to beable to gather empirical evidence, we have to presuppose that theapproach already exists in practice. This paper proposes a social labmethodology that is suited to deal with this circularity. Themethodology combines (...) the defining features of social labs emergingfrom the literature such as agility and real-world focus withestablished theories and approaches such as action research andexperiential learning. Thereby it enables the parallel investigationand propagation of RRI. The framework thus constructed provides atheoretical embedding of sociallabs and overcomes some of theknown limitations of the constitutive approaches. (shrink)

This chapter illustrates how an adapted version of Interpretive Interactionism, a qualitative methodology for insider researchers, can facilitate a neurodiversity-affirming interview study with multiply neurodivergent research participants. Influences from Access Intimacy, Crip Theory, and participatory autism research are synthetised to create a ‘cripped interactionism’. The chapter outlines, with concrete examples, how this methodology transformed research access from an act of logistics to a relational act, how it mitigated power dynamics and resisted epistemic injustice, and how it led (...) to an ongoing dialogue with participants. Anticipating access needs as much as possible and being proactive in offering adaptations is central, rather than waiting for participants to request accommodations. Interviews are ‘cripped’ to become dialogues, reflecting a deep and genuine reciprocity rather than a mechanical extraction of community knowledge. ‘Found poetry’ alongside the lay summary is used to make the research findings accessible to readers with a range of communication preferences and engage the heart and as well as the mind. (shrink)

By assuming that REM sleep either plays a critical role in all memory consolidation or no role in any, Vertes & Eastman have chosen to reject, rather than explain, robust experimental findings of a role for sleep in memory and learning. In contrast, Nielsen has attempted to integrate conflicting findings in the dispute over REM versus NREM mentation. Researchers must trust the data more and the theories less, and build integrative rather than exclusionary models if they hope to resolve these (...) knotty problems effectively. [Nielsen; Vertes & Eastman]. (shrink)

Much is written about quantitative techniques and feminist and gender studies. Despite convincing arguments in favour of utilizing these methods, they are still largely absent in the heartland of gender studies. In this article, this is related to the observation that methods are tied to epistemological positions and consequently quantitative studies are a priori associated with overgeneralization. A new perspective – the diversity continuum – is presented in order to contextualize research and make it possible to judge it relatively. (...) This shows that quantitative research can increase the understanding of differences and similarities. Subsequently, it is discussed how quantitative research can be utilized to understand differences between people using existing basic techniques. In line with the conceptualization of diversity, this includes techniques to study intersectionality and how developments have different effects on men and women. The continuum and techniques are illustrated by an example of political interest. (shrink)

In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are (...) resource-poor, located outside of traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research. (shrink)

Doing scientific research with animals is a subject of intense societal debate, often involving polarized and public discussions with stakeholders and groups interested in animal research. Patients, given their medical conditions, have a high stake in biomedical research, including research involving animals. However, their perspectives are rarely heard in policy-related discussions on animal experiments. This essay discusses the positions and stakes of groups involved in public discourse and policy-relevant engagements. It further explores the legitimate interest of (...) patients and the need for an all-inclusive approach to animal research policy. This subject is complex and democratic societies must address societal issues with an all-inclusive approach to reach policy decisions reflecting the interests of all stakeholders. The positions of groups—pro-animal research stakeholders and anti-animal-research advocates—with vested interests involved in animal research discourse considerably shape research policies. Animal research policies arguably affect patients. Through democratic ideals, inclusive approaches that are suitable for resolving science-driven societal issues, and initiatives currently guiding animal research policies, patients need to actively be involved in public discourses and policy-relevant decision-making processes in deciding the place of animal research in biomedical advancement as a society. (shrink)

This article reflects upon the current state of Equity, Diversity and Inclusion (EDI) on Research Ethics Board (REB) membership in Canada. As post-secondary education institutions strive to increase EDI initiatives across all areas, diversity among the REB membership becomes increasingly critical. Increasing EDI on the REB is complex in the context of colonialism and a discipline that has historically mistreated those from equity-deserving groups. Many barriers to achieving diversity in academia exist that are also reflected in the REB membership. (...) REBs lacking in diversity may struggle to conduct robust ethical reviews, and without full institutional support, increasing diversity in the membership remain a challenge. Diversity amongst community members adds another layer to this complexity with additional barriers such as lack of inclusive recruitment strategies and equitable compensation. Despite community members being central the mandate of the REB, they can be perceived as secondary to affiliated subject matter expert members. This perception de-values the work of the non-affiliated community member, creating conditions of tokenism and power imbalances. Given the unique standing of the REB within the research enterprise, it is well positioned to be a leader in the EDI space. Barriers identified are surmountable and with genuine effort, the REB can champion EDI. It will take full institutional support to enact change and disrupt barriers to EDI for the REB to reach an ideal state of authentic EDI in its membership and processes. Such endeavors can only act to strengthen the ethics review of research and increase research excellence throughout Canada. (shrink)

The revision of the Council of International Organizations of Medical Sciences (CIOMS) International ethical guidelines for health‐related research (2016) heralds a paradigm shift from the ‘protectionist’ policies that emerged following historical research atrocities of the 20th century, towards a more nuanced and inclusive approach to research participation. Adopting this modified approach will enable countries to secure the benefits of research for individuals and for society as a whole, while at the same time minimizing the potential (...) for exploitation and research‐related harms. This article considers the potential impact of Guideline 16 of the CIOMS 2016 from a New Zealand perspective, with respect to research involving adults with impaired capacity and who are incapable of giving informed consent. While the CIOMS 2016 apply a ‘minimal risk’ threshold to guide research involving adults who lack capacity to consent, New Zealand law currently adopts a ‘best interests’ standard which significantly restricts the scope of permissible research that may be performed in this context. This article argues that the CIOMS 2016 should influence change to New Zealand’s legal framework for ethical review of research. CIOMS 2016 provides useful guidance for the necessary standards and processes to enable the responsible and ethical inclusion of adults with impaired capacity in research. (shrink)

Scientists imagine constantly. They do this when generating research problems, designing experiments, interpreting data, troubleshooting, drafting papers and presentations, and giving feedback. But when and how do scientists learn how to use imagination? Across 6 years of ethnographic research, it has been found that advanced career scientists feel comfortable using and discussing imagination, while graduate and undergraduate students of science often do not. In addition, members of marginalized and vulnerable groups tend to express negative views about the strength (...) of their imaginations and the general usefulness of imagination in science. After introducing these findings and discussing the typical relationship between a scientist and their imagination across a career, we argue that reducing the number or power of active imaginations in science is epistemically counterproductive. We suggest several ways to bring imagination back into science in a more inclusive way, especially through courses on imagination for scientists, good role models, and exemplar-based learning. (shrink)

In view of the fact that culture-inclusive psychology has been eluded or relatively ignored by mainstream psychology, the movement of indigenous psychology is destined to develop a new model of man that incorporates both causal psychology and intentional psychology as suggested by Vygotsky . Following the principle of cultural psychology: “one mind, many mentalities” , the Mandala Model of Self and Face and Favor Model were constructed to represent the universal mechanisms of self and social interaction that can be (...) applied to any culture; both models can be used as conceptual frameworks for analyzing mentalities of people in any given culture. Taking research works from Foundations of Chinese Psychology: Confucian Social Relation as exemplars , this article illustrates how to construct culture-inclusive theories of Confucianism by multiple philosophical paradigms. The mechanism of culture-inclusive theory can be applied to explain qualitative research findings on lifeworld events of people in a particular society. It can also be utilized to predict results of quantitative research conducted to verify theoretical propositions in the scientific microworld by empirical methods. (shrink)

We advance a novel approach to gender inclusive language, showing how it can be used in perinatal and postnatal care. Existing attempts to use language inclusive of trans and non-binary parents have faced objections, prompting calls to use trans-exclusionary “sexed” language as a default (Gribble et al. 2022). We show that these objections attach only to some unsatisfactory attempts at inclusive language. We articulate the moral and communicative goals at stake, and then work through a range of (...) examples to show that no single linguistic strategy can meet these goals in all contexts. A pluralistic approach is needed. Our pluralistic approach draws on gender neutral, gender additive, and second-person locutions, as well as taking advantage of the possibility for multiple targeted communications. Moreover, this pluralistic approach highlights the gaps in research and understanding needed to ensure substantively inclusive care in future. (shrink)

English- Vademecum: 77 Minor Terms for Writing Urban Places offers a set of concepts that stimulate new approaches in planning, architecture, urban design, policy, and other practices of spatial development. These diverse concepts might reveal blind spots in urban discourse or bring insights from one discipline to another. The term ‘minor’ refers to the ambition to look at the local and social specificity of urban places and to challenge established discursive frameworks by giving voice to multiple actors in the debate. (...) This publication hopes to be a field guide that inspires spatial professionals, researchers, students, and communities to exchange knowledge, to engage with urban places and to discover and develop responsible approaches to current urban challenges. Dutch – Vademecum: 77 Minor Terms for Writing Urban Places biedt een reeks concepten die nieuwe benaderingen in architectuur, stedenbouw en ruimtelijke ontwikkeling stimuleren. Deze uiteenlopende concepten kunnen blinde vlekken in het stedelijke discours onthullen of inzichten van de ene discipline naar de andere brengen. De term 'minor' verwijst naar de ambitie om naar de lokale en sociale specificiteit van stedelijke plekken te kijken en om gevestigde discursieve kaders uit te dagen, door stem te geven aan meerdere actoren in het debat. Deze publicatie is te zien als een veldgids die ruimtelijke professionals, onderzoekers, studenten en gemeenschappen inspireert om kennis uit te wisselen, over onderzoek naar stedelijke plekken, en om verantwoorde benaderingen te ontdekken en te ontwikkelen voor de hedendaagse stedelijke uitdagingen. (shrink)