Interrogating Sites of Knowledge Production: The Role of Journals, Institutions, and Professional Societies in Advancing Epistemic Justice in Bioethics

This article refers to:

Proposed Principles for International Bioethics Conferencing: Anti-Discriminatory, Global, and Inclusive

This article is referred to by:

The Ethics of International Bioethics Conferencing: Continuing the Conversation

Jecker et al. (2024) propose seven ethical principles to guide international bioethics conferencing, applying them to the selection of Qatar as the location for the 2024 World Congress of Bioethics. Among the principles is epistemic justice, wherein “modes of knowledge production by marginalized people and groups” (Jecker et al. 2024, 18) are foregrounded. In choosing Qatar as the 2024 conference host, the International Association of Bioethics offers to “counter epistemic injustices associated with credibility deficits assigned to Muslim and Arab bioethicists” (Jecker et al. 2024, 22). Conducting the conference in Qatar is expected to showcase local bioethics talent and to bring more than 800 bioethicists to the region.

While conducting a major bioethics conference in regions underrepresented in mainstream bioethics discourse could be an initial step in promoting a more global bioethics, addressing Western dominance in bioethics entails much more than a four-day event. Decolonizing and diversifying bioethics necessitate a continuous effort to critically examine not just where bioethics discussions are made, but also who gets to discuss what (Pratt and de Vries 2023). This commentary begins by first acknowledging the Whiteness of bioethics (Anderson 2021; Mayes 2020) and reflecting on its implications for an epistemically just (Fricker 2007; Bhakuni and Abimbola 2021) academic discipline. Then, it describes how three major sites of bioethics knowledge production can be interrogated to advance antidiscriminatory, antiracist, and anticolonial global bioethics.

THE EPISTEMIC WHITENESS OF BIOETHICS

Anderson (2021) and Mayes (2020) have lamented the Whiteness/Eurocentrism of bioethics, in addition to the lack of diversity in bioethicists. They underscore the explicit attachment of mainstream bioethics to the liberal tradition of moral and political philosophy (Mayes 2020), emphasizing individual autonomy and limitedly accounting for lived experience and local contexts (Anderson 2021). The Whiteness of bioethics ultimately “shapes the reality of what is considered an ethical problem and the ways in which bioethicists think ethically about such problems” (Mayes 2020, 301).

For instance, the accountability of modern researchers to ethics committees can be positioned as a panacea to historic abuses of Indigenous populations. Instead of interrogating the value of certain kinds of research for Indigenous peoples, “a discourse on ethics could be used to assert contemporary institutional superiority and special white virtue, as a public relations exercise of little or no value to Aboriginal people” (Anderson 2021, 94). Even national guidelines for ethical conduct of research with Aboriginal and Torres Strait Islander peoples stress the positive outcomes of research, with limited acknowledgment of past and present dehumanizing practices and of scientific racism (Bond, Singh, and Tyson 2021).

On a transnational level, the Whiteness of bioethics can translate to informed consent practices that are insensitive to local values. Anderson (2021) describes how Fore interlocutors from the Eastern highlands of Papua New Guinea became agitated when study information and a request for oral consent were read out and then interpreted into Fore. Western ethics protocols on obtaining consent and protecting populations deemed “vulnerable” may not necessarily resonate with other populations. Reading out detailed study information could imply distrust, and anonymizing interviewees because they are “vulnerable” might not align with their desire to be recognized for their contributions to science (Anderson 2021).

The Whiteness of bioethics does not just demonstrate epistemic injustice; it also risks perpetuating further epistemic injustices. Building upon Fricker’s (2007) account of testimonial and hermeneutical injustices as ways in which someone is harmed in their capacity as a knower, Bhakuni and Abimbola (2021) highlight how certain research/academic practices can interfere with people’s ability to equally and fully participate in knowledge use, production, and circulation. Testimonial injustice occurs when knowledge produced by marginalized groups and local experts is not deemed legitimate enough, while hermeneutical/interpretive justice happens when only the worldviews and values of dominant groups are considered as universal (Bhakuni and Abimbola 2021). When marginalized populations from the Global South are deprived of opportunities to decide and disseminate what constitutes ethical research/care for them and are expected to completely embrace Western-originating notions of ethical conduct, they experience both testimonial and interpretive injustices. These could then prevent people from these communities from seeing themselves as welcomed contributors to bioethics knowledge.

The epistemic whiteness of bioethics even pervades ethics education. While most bio/medical ethics students are assessed on their knowledge of the four principles, along with utilitarianism and deontology, they are not even expected to learn the teachings of Sun Szu-Miao and in the Caraka Samhita on filial piety and physician responsibility—despite Confucian and Vedic teachings guiding medical practice since the second century BCE (Chattopadhyay and De Vries 2008; Tai and Lin 2001). Aren’t Indigenous, Asian, African, Pacific, and Latin American ways of knowing, healing, and caring worthy of being mainstreamed?

INTERROGATING SITES OF BIOETHICS KNOWLEDGE PRODUCTION

Addressing epistemic injustice, be it in bioethics research, education, or application/practice, necessitates critical reflection on how bioethical knowledge is produced and legitimized, and on how producers of bioethical knowledge are acknowledged and uplifted. Given that bioethics research informs both practice and education, examining sites of bioethics knowledge production can help illuminate why mainstream bioethics is predominantly White and Western.

Jecker et al. (2024) already alluded to how bioethics organizations are structures that can either counter structural injustice or entrench it—through their practices that generate systems of collaboration, network, and support. Beyond regularly organizing conferences, professional societies also play key roles in the public dissemination of academic bioethics discourse and in advocating for ethical insights to be incorporated into policy, research, and healthcare. Given their power in shaping the public understanding of bioethics, and even raising alarms on certain research or medical practices, diversity in membership and leadership of professional societies is paramount. Interrogating epistemic injustice in professional bioethics societies requires (1) examining racial/ethnic and geographic diversity among its members and leaders; (2) evaluating conferences and other events that they organize, including the themes, venue, keynote speakers and presenters (Pratt and de Vries 2023), and their initiatives to increase participant/presenter diversity; and (3) investigating their efforts to build networks and collaborations, especially those that capacitate minority and Global South researchers (Viana 2024). Bioethics societies could draw inspiration from initiatives of other academic networks/societies, such as the PCST (Public Communication of Science and Technology) Network. Organizers of the 2023 PCST Conference in the Netherlands used 15,000 USD from the Kavli Foundation to support six Rotterdam fellows from developing countries with visa, registration, airfare, and accommodation costs, in addition to soliciting funding from different Dutch universities to provide travel fellowships of up to 1,250 euros (1,369 USD) for people identifying with a minority community (Network for the Public Communication of Science and Technology 2022).

Academic journals and publishers could also contribute to epistemic injustice in bioethics through limited representation of authors (Borry, Schotsmans, and Dierickx 2005), editors (Chattopadhyay, Myser, and De Vries 2013), and reviewers from developing countries. Moreover, epistemic injustice could manifest as predominance of Western-originating epistemologies, concepts, and theories (Pratt and de Vries 2023)—potentially, even in discussions on issues that significantly concern racial/ethnic minority communities and people in the Global South. Thus, interrogating epistemic injustice in academic bioethics publishing entails (1) auditing of bioethics journal editorial boards for diversity, including representation of minorities and of Global South researchers across various editorial positions; (2) examining citational practices and reviewing ethics publications to determine who gets to be cited, where they are from/based, and what philosophical theories are applied (Pratt and de Vries 2023); (3) examining article and book/chapter authorship, including the positionality of authors from minority backgrounds and developing countries in the order of authors (Bhakuni and Abimbola 2021); and (4) understanding how journal indexing and ranking impact the likelihood of articles to get viewed and cited. While journals such as the Eubios Journal of Asian and International Bioethics (EJAIB) contain numerous articles from Asian and/or developing countries, given EJAIB’s diamond open access publishing model (no access and no publication fee), it is less likely to be cited and read by biomedical/health researchers, and even by other ethicists/social scientists, as most articles are not indexed in PubMed (only 16 are indexed – the majority of which were published in 2003) or Scopus (only 15 are indexed – the majority of which were published in 2003).

Finally, bioethics institutions have a crucial role to play in addressing epistemic injustice. Bioethics research centers, research ethics boards, and clinical ethics committees influence what bioethics knowledge is or can be produced, and what knowledge is applied in evaluating research projects or resolving healthcare dilemmas. Interrogating epistemic injustice in institutions requires (1) auditing where these institutions are and the communities they serve; (2) examining the diversity of academics across different levels, research and professional staff, and graduate and undergraduate students/trainees (Danis, Wilson, and White 2016); (3) evaluating collaborations with other institutions and organizations, especially those that have limited funding and/or from developing countries, and investigating how funding is allocated in research partnerships (Pratt and de Vries 2023); and (4) examining research priorities and agendas. Moreover, it is crucial not only to hire diverse scholars or committee members, but also to create safe and nurturing spaces where their voices and perspectives are included (Pratt and de Vries 2023) and their interests are promoted. Commitment to diversity and inclusion should also be ongoing and persisting—with recruitment of minority/Global South researchers made not only as a reaction to flashpoints such as the Black Lives Matter protests, anti-Asian hate crimes during COVID-19 (Viana 2023), and wars that displaced researchers from conflict-affected countries.

Overall, interrogating sites of bioethics knowledge production is just the first of many steps. Social and epistemic justice cannot be attained by simply increasing the number of editors, authors, organization presidents, or institute directors from ethnic minority communities or Global South countries. There should also be intersectional inclusion (Viana 2024), where intersectionally minoritized groups, such as women and LGBTQI + individuals of color or Global South researchers who have a disability, are afforded opportunities to partake in discussions and lead bioethics publications, institutions, and organizations. More than diversity in people, diversity in ethical frameworks should also be aspired to—where communal relationality, depicted by the concepts of “ubuntu” and “pakikipagkapwa” (Cagayan, Mendoza, and Viana 2022), is given consideration equal to that of notions of individual autonomy in obtaining informed consent. Ultimately, advocating for epistemic justice in bioethics also necessitates actively standing up to the powers that racialize, discriminate, and epistemically colonize non-Western bioethics researchers and communities. As Danis, Wilson, and White (2016, 9) point out, “When power imbalance leads to unfair treatment, there may be compelling reasons for [bioethicists] taking more assertive roles as activists who push for institutional change.”

DISCLOSURE STATEMENT

No potential conflict of interest was reported by the author(s).

Additional information

Funding

I am grateful to the Australian National Centre for the Public Awareness of Science (CPAS) at the Australian National University for supporting my participation in the 2023 Public Communication of Science and Technology Conference. I also acknowledge funding from both the Australian National Centre for the Public Awareness of Science (CPAS) at the Australian National University (ANU) and from the Responsible Innovation Future Science Platform of the Commonwealth Scientific Industrial Research Organization (CSIRO) for an ANU-CSIRO research fellowship on responsible innovation, which allowed me to conduct preliminary research on epistemic injustice.