Paper long abstract:

Increasing diversity and inclusion have become a pressing concern in health research. Within the context of a recently initiated large interdisciplinary consortium that aims to conduct longitudinal and inclusive research into household practices, the microbiome and metabolic health, one of the main goals is to enhance the inclusion of what is often referred to as “under-represented populations” in health-outcome-centered research. While acknowledging the importance of engaging citizens from diverse social background, as social scientists we raise the following questions: what diversity, inclusion and representation mean; how these notions operate in practice during the selection and engagement of citizens in research; what outcomes they generate; and how the pursuit of diversity and inclusivity – along with the associated processes of framing and categorisation – might themselves be a source of exclusion or a reason for non-participation. In this presentation, we aim to reflect on these questions and discuss our own recruitment practices, where we attempt to balance a representation and justice-driven approach to recruitment with a theoretical sampling approach informed by grounded theory.

Paper short abstract:

Ethnic classifications are routinely used to categorize people in the life sciences. With our contribution, we aim to analyze the diverse meanings and problems of the concept based on a literature review and a quantitative content analysis of studies by researchers based in Germany.

Paper long abstract:

Ethnic classifications are among the most commonly used concepts to categorize people in the life sciences. Based on the observation that very different aims and approaches characterize their use, this paper aims to critically examine the range of uses in life science research in Germany. For this purpose, we present the results of a systematic literature review and a quantitative content analysis of 249 studies by authors affiliated with German institutions published between 2018 and 2020. We analyze how ethnicity is assigned to the research subjects, what kinds of social and biological differences are studied, and what reasons are given by authors for the described differences. Our investigation aims to elucidate the inherent problems embedded within the concept. In our analysis, we found that contrary to the author guidelines of many science journals, most articles neither explain how the concept is defined nor how the classification of the research subjects was done. Contrary to frequent statements in genetics and anthropology that race and ethnicity are social categories, ethnic group classifications are also used as biological concepts to measure biological and genetic differences and a considerable amount of the studies give genetic explanations for the differences found. Furthermore, ethnicity is used interchangeably with other terms in many studies, and among these, also “race” is used as an equivalent or relational term. Our findings, therefore point to several problematic aspects associated with ethnicity as a very fuzzy concept with a spectrum of social, biological, and genetic meanings.

Paper short abstract:

Following a Dutch consortium that combines the biomedical and social sciences within an inclusion-and-difference paradigm, I aim to explore the enactments of race and class throughout various microbiome related practices in laboratories, clinics and families in the Netherlands.

Paper long abstract:

Drawing on an inclusion-and-difference paradigm that is adopted from the US and increasingly applied in Dutch health research employing Participatory Action Research methodologies, my aim is to look at the performativity of race/ethnicity and class in Dutch microbiome related practices.

I take a consortium, representing microbiology, public health, (dental) medicine, computational science, the municipality and sociology, as a case wherein obesity and tooth decay are understood from a health inequalities and public health framework. Herein, I intend to explore under which normativities and circumstances markers of difference such as race/ethnicity and class are mobilized throughout a research project on microbiomes of Dutch babies. I aim to engage with microbiome related practices in various moments and sites, in clinics, laboratories and families so to gain a better understanding of how researchers draw from categories in the first place, how race/ethnicity and class are brought into being, and to explore some implications for participants, researchers and research outcomes.

Looking through an STS and autobiographical lens at this case, the author’s positionality will offer empirical substance in the form of ethical puzzling, from which we can reflect on inclusion and difference by example of this consortium.

Paper short abstract:

This study develops a decolonial perspective on DEI in biomedical research. Highlighting historical inequities and coloniality of knowledge, it aims to enrich debates on DEI in biomedicine, offering theoretical insights and empirical evidence on South-North dynamics in Global Health collaborations.

Paper long abstract:

This study presents a decolonial conception of diversity, equity, and inclusion (DEI) in biomedical research. It responds to the longstanding call to decolonize Global Health by bringing together the perspectives of Global Health researchers from the Global South and North to develop a framework for conceptualising DEI from a decolonial standpoint. We argue that comprehending the historical and current inequities in Global Health research is essential for institutional change that meaningfully incorporates DEI into biomedical research. To this end, we highlight the concept of ‘coloniality of knowledge’ as central to efforts to promoting and doing diversity in biomedical research. We report the results of a scoping review on decolonial scholarship concerning coloniality of knowledge and DEI in biomedicine. Drawing on their intersections, we construct a framework for the decolonial understanding of DEI in biomedical research. Additionally, we organize a Summer School on ‘Decolonizing Global Health with a Focus on Biomedical Sciences, Research, and Education’ in partnership with the Charité Institute of International Health, the University of the Witwatersrand, and the Latin American organization MetaDocencia. Through participant observation during this 4-day event, we identify key themes in experiences with Global Health collaborations between the Global South and North, integrating these results into our framework. By employing an ethnographic approach, we aim to enhance the theoretical framework on decolonial DEI in biomedical research. Overall, this study presents a decolonial understanding of DEI, alongside empirical insights into the challenges and facilitators of DEI practices in Global Health collaborations.

Paper short abstract:

This paper explores what ‘globalizing’ HIV cure research entails in practice for researchers involved in the design of a multidisciplinary research consortium which seeks to contribute to further equitable and ethical HIV cure research on the African continent.

Paper long abstract:

In recent years, there has been a growing recognition of the need to expand HIV cure research to include low- and middle-income countries, particularly those most affected by the HIV epidemic, such as those in sub-Saharan Africa. This shift reflects a broader commitment to global health equity and the recognition that diverse populations must be included in research efforts to ensure that any advances in HIV cure are applicable and accessible to those most in need. As a result, there has been increasing investment in building research capacity, laboratory infrastructure, and collaborative partnerships in African countries to support HIV cure research and contribute to global efforts to end the HIV/AIDS pandemic. In this paper, we explore what ‘globalizing’ HIV research entails for those involved in funding, designing and participating in HIV cure research in Africa countries. Drawing on ethnographic insights as social scientist engaging in a multi-disciplinary HIV cure research consortium, we seek to explore the following questions: What does equitable and ethical HIV cure research mean to those involved in designing HIV cure research on the African continent? What choices, adaptations, translations during the design of HIV cure research projects are desirable to practice equitable and ethical HIV cure research through transnational partnerships?

Paper short abstract:

Drawing on qualitative research with UK members of public, this presentation interrogates the ‘implicit normativity’ (Cribb, 2020) of the contemporary discourse on diversity and inclusion in genomic research.

Paper long abstract:

The lack of diversity in datasets used for genomic research is increasingly recognised as an urgent ethical issue, leading to biases in the clinical translation of emerging biomedical knowledge and the exacerbation of existing health inequities. As calls have multiplied to foster the inclusion of under-represented communities in research, some (cf. Epstein, 2007) have criticised the folding of wider issues of health inequities into a narrow definition of diversity (usually intended as diverse genetic ancestry). Little attention, however, has been paid to how the parameters of the problem are negotiated in practice.

In this presentation, we examine the ‘implicit normativity’ (Cribb, 2020) of the contemporary debate on diversity and inclusion, exploring what emerges as a matter of explicit ethical concern (cf. Latour, 2005), and what remains unquestioned. The presentation draws on a focus group study with 100 participants from ethnic minoritised and socio-economically disadvantaged communities, exploring their views on communication strategies commonly used to invite marginalised groups to take part in genomic research.

Comparing and contrasting participants' responses with the professional debate on diversity and inclusion’ we illustrate how the latter both responds to and shapes the experiences of the communities it aims to include. While it contributes to foreground issues of justice that had long remained marginal in the bioethics debate, the contemporary discourse also 'contains' (cf. Cribb. 2020) the problem of diversity and inclusion in ways that continue to exclude important concerns of those currently under-represented in research.