Global Bioethics Library

Vorathep (Dev) Sachdev is leading a project called “Global Bioethics Library” in collaboration with the Black and Brown in Bioethics (BBB) team. BBB are building an open-access library of resources that centres academic literature and other forms of knowledge (podcasts, images, blogposts, videos, etc.) related to bioethics and global health that are considered to be Sub-altern, Third World, Eastern, Global South, Regional, Religious, Decolonial, Postcolonial, Feminist, Queer, Indigenous, and Disability Ethics, among others.

Please provide any recommendations you have for such resources you have produced or have found helpful in your own learning/research/teaching/training using this form. Be as broad as possible in your suggestions, as we do not aim to classify what should and should not fit but hope to organise and introduce these resources in a way that can be user-friendly.

This library is a response to a shared experience we have heard from many colleagues internationally. Bioethics largely prioritises Western-centric texts as canonical work, leaving individual academics responsible for exploring “alternative” perspectives independently—a task that can be confusing and difficult to undertake alone. The library will be a resource for learning, researching, teaching, and training.  In this shared effort to build a global library, we would appreciate your help in sending us any resources  you may think are relevant. 

If you have any questions, please contact the project lead, Dev (vorathep112@gmail.com).

Inclusive Bioethics Methodology: Introductory Training Videos

The aim of this video series is to provide researchers with tools to develop and implement bioethics research projects with inclusive design principles that include the diverse demographics and lived experiences of marginalised groups, and relevant and appropriate theories and concepts.

Each 20–30-minute video introduces a nuanced understanding of a method, framework, or concept and directs audiences to related resources. The videos are freely accessible and include expertise contributed by experienced researchers working with different marginalised communities across the globe.

These videos can help researchers looking to question canonical empirical research methods in bioethics and learn more context-appropriate methods that they could use in developing and implementing their own research projects in inclusive ways.

Video series editorial team: Kumeri Bandara, Matimba Swana, Harleen Kaur Johal, Faiq Habash

 

  1. The Need for Reflexivity – Supriya Subramani

 

In this video, Dr. Supriya Subramani discusses the concept of reflexivity. After introducing the concept, she explains the importance of reflexivity, underlining its role as a practice that is ethical, political, epistemological, and methodological.

About the speaker: Dr. Supriya Subramani is a social researcher focusing on moral emotions and ethics within health and illness, currently working as a lecturer in health ethics at the University of Sydney, Australia. Her research focuses primarily on applied philosophy, the philosophy of medicine, and qualitative health research. She is driven by an interest in understanding personal stories, narratives, and lived experiences, and how these intersect with one’s moral self and identity, and how they influence health ethics and illness discourse.

You can find more of Dr. Subramani’s work at: www.supriyasubramani.com

 

  1. Language, Translation, and Cultural Competency — Mpoe Johannah Keikelame

 

In this video, Dr. Mpoe Johannah Keikelame discusses issues of language, translation, and cultural competency in decolonising research. She draws lessons from her qualitative research project that explored perspectives and subjective experiences of adults who have epilepsy and their carers in an urban township in Cape Town, South Africa.

About the speaker: Dr. Mpoe Johannah Keikelame is an independent qualitative research consultant with special interest in conversations that focusses on decolonising research methodologies. She received her PhD in Psychology from Stellenbosch University, in South Africa. Her published work highlights the importance of researchers to critically reflecting on fieldwork challenges on conducting research among the vulnerable and marginalized population groups. She shares some unexpected events in the field, which are of methodological importance in a decolonizing research process.

You can find more of Dr. Keikelame’s work at: linkedin.com/in/dr-mpoe-johannah-keikelame-8a536a144

 

Upcoming videos:

  1. Envisioning Indigenous Citational Practice – Hana Burgess
  2. Critical Process Matrix – Paola Buedo
  3. Nuancing Consent – Mehrunisha Suleman
  4. Using Theories and Frameworks: Gender and Sexual Variance, and Justice – Tiia Sudenkaarne

 

BBB 2024 Conference

The First Black and Brown in Bioethics 2024 Conference “Engaging Diversity in Bioethics Theory and Practice”

The Black and Brown in Bioethics network aims to create spaces to discuss issues affecting ethnic minorities in the UK, nurture underrepresented communities through knowledge exchange, academic interactions and driving change in bioethics.  This conference, organised by Matimba, focused on the theme “Engaging Diversity in Bioethics Theory and Practice”. BBB chose this theme for our first conference to counter the lack of active recognition and consideration given to meaningful engagement of diverse voices and experiences in the bioethics field.

We were very pleased to have participants in person and online from a range of disciplines and countries across Europe, Africa, Asia, and the Americas. We were grateful to our keynote speakers, Sridhar Venkatapuram (King’s College London) and Rita D’Alton-Harrison (Royal Holloway, University of London),  fireside chat interviewees, Anna Dowrick (University of Oxford) and Tanvi Rai (University of Oxford), and panelists Alya Khan (London Metropolitan University), Agomoni Ganguli-Mitra (University of Edinburgh) and Mavis Machirori (Ada Lovelace Institute).

We were also delighted to be supported by our session chairs Jordan Parsons (University of Birmingham), Kumeri Bandara (University of Oxford), Jonathan Ives (University of Bristol), Rachael Gooberman-Hill (University of Bristol) as well as Eve Kamau, (Fabulous Minds Founder & Senior Director at Thermo Fishier Scientific), our volunteers Helen Smith, Shyamli Suneesh, Avgi Stavrou, Faiq Habash and funders the Institute of Medical Ethics; please visit ime-uk.org for further information, the Society for Applied Philosophy; please visit www.appliedphil.org, Fabulous Minds follow fabulousminsco on Instagram, and Inclusive Research Collective; please visit inclusiverc.com/. Lastly we enjoyed the comedy performance by Muhsin Yesilada who made us all laugh with antidotes about dark humour, misinformation and academia. The BBB24 music playlist was made by Harleen and can be found on Spotify.

Watch the webinar recordings here:

 

Congratulations to our prize winners:

Oral Abstract presentation winners

  • Patricia Neville (University of Bristol, UK) & Eleanor Fleming (University of Maryland, USA) A Critical Retelling of Dental Ethics Told Through “George Washington’s Complete Denture”
  • Whitney Cabey (Temple University, USA) Abolition in Medicine or Abolition of Medicine?: Exploring Carcerality in Biomedical Contexts

Poster Abstract elevator pitch winners

  • Nishita Nair (King’s College London, UK) Social research ethics codes and institutional ethics processes: Perspectives of researchers working with ethnic minority communities in the UK
  • Manisha Pahwa (McGill University, Cananda) Precision breast cancer screening and breast cancer disparities in South Asian people in Canada

Poster Abstract digital poster gallery winner

  • Deborah Francis (Queen’s University, Canada) A qualitative study of the needs of Black, Indigenous, and People of Colour students in higher education

Conference Materials

BBB 2024 Conference booklet containing information on the Conference programme, Venue, Speakers, Abstracts, Website and Social Media. The BBB 2024 conference slides are available for review and the BBB 2024 e-Poster digital gallery is available on demand until the end of July 2024.


Scientific Committee members

  • Gideon Cornel Msee, University of Edinburgh
  • Rachel Davies, University of Bristol
  • Jordan Parsons, University of Birmingham
  • Vorathep (Dev) Sachdev, University of Edinburgh
  • Ruach Sarangarajan, University of the Witwatersrand
  • Helen Smith, University of Bristol
  • Supriya Subramani, University of Sydney
  • Rasita Vinay, University of Zurich

Sponsors

      

Bioethics and Global Health Webinar

Bioethics and Global Health: In Search of Common Ground

The Black and Brown in Bioethics network aims to expand opportunities for community engagement for people of colour both within the UK and around the world. This webinar, organised by Matimba, focused specifically on the divide – but also the similarities – between the ‘Global North’ and ‘Global South’, and aimed to identify areas of learning and convergence that should become the focus of future collaboration and development. We were delighted to be joined by Caesar Atuire (University of Ghana and University of Oxford), Sharon Kaur (University of Malaya), and Isabella Aboderin (Perivoli Africa Research Centre). We are also grateful to Rishita Nandagiri (King’s College London), who chaired the discussion.

Watch the webinar recording here:


About the Speakers

Associate Professor Caesar Atuire (he/him) is a philosopher who works on the dialogue and overlaps between African and Euro-American philosophy at the University of Ghana and the University of Oxford. His research draws on various traditions of African philosophy to address global ethical issues. He has worked on the frameworks informing the understanding of mental health in the African context, the principles surrounding research and healthcare ethics in a communitarian context, and how African conceptions of solidarity can contribute to conversations around the right to health and global health. He has also worked on models of decolonisation in global health and contributed to the conversation around Black Lives Matter and the removal of statues of racists from the public space. In short, he is a philosopher who is concerned about ethics and frameworks of equity in the generation, dissemination, and sharing of knowledge and resources in the health and healthcare spaces. Outside academic life, he leads an NGO, Amicus Onlus, that operates in healthcare, basic education, vocational skills training, and re-integration of returned illegal migrants to Europe in Ghana. Their work is mainly among rural communities and the underprivileged. This dimension informs and compliments my philosophical commitment to a more ethical world.

Professor Isabella Aboderin (she/her) is Perivoli Chair in Africa Research and Partnerships and Director of PARC. Alongside her work here, Isabella is Professor of Gerontology in Bristol’s School for Policy Studies. Isabella is also an extraordinary professor at North West University, South Africa and Associate Fellow of the African Population and Health Research Center (APHRC), Nairobi. Among other roles, Isabella serves as regional chair for Africa of the International Association of Gerontology and Geriatrics (IAGG); as a member of the Global Commission on creating a Roadmap for Healthy Longevity; and as part of the World Economic Forum Global Future Council on Longevity. She is a trustee on the boards of the United Nations International Institute on Ageing (INIA) and the Population Reference Bureau (PRB).

Dr Sharon Kaur (she/her) is a Senior Lecturer at the Faculty of Law, University of Malaya, where she has designed modules on healthcare law and ethics for undergraduate as well as postgraduate students including a number of modules on the Masters of Health Research Ethics (MOHRE) at the Faculty of Medicine. Her research interests primarily revolve around medical research ethics and global health issues. She is currently working on a Wellcome funded project, Developing a Southeast Asian Bioethics Network with colleagues from Universiti Malaya, the National University of Singapore, and the Mahidol Oxford Tropical Medicine Research Unit.

Dr Rishita Nandagiri (she/her) is a Lecturer in Global Health and Social Medicine at King’s College London. Her interdisciplinary research focuses on gender, abortion and reproductive (in)justices in the Global South. Underpinned by feminist and reproductive justice approaches, her research interrogates how power and politics manifest and are wielded at individual, interpersonal, community, and macro levels. She continues to work closely with feminist collectives and advocacy groups. Rishita currently serves on the International Union for the Scientific Study of Population’s panel on Abortion Research, is an editorial advisory board member of the BMJ Sexual & Reproductive Health journal, and co-runs, with Joe Strong, the Abortion Book Club (a public book club examining depictions of abortion in fiction).

Inclusionary Digital Health Webinar

Insights from Industry: Inclusionary Digital Health

The Black and Brown in Bioethics network aims to bring together different sectors and share good inclusive practice, focusing on approaches to remove barriers and allow everyone to engage meaningfully in our futures. This webinar, organised by Matimba, focused on digital health from an industry perspective with the aim to evaluate and discuss: (1) the past, present and future digital health landscape, (2) digital health inequalities, (3) digital health inclusion strategies and (4) why digital inequalities and inclusion matter in healthcare.

We were delighted to be joined by Evelyn (Eve) Kamau (Thermo Fisher Scientific), Niyoshi Shah (Quicksand Design Studio) and Srushhti Trivedi (Amaris Consulting). We are also grateful to Arianna Manzini (DeepMind), who chaired the session.

Watch the webinar recording here:


About the Speakers

Niyoshi Shah (she/her) – Consultant, Quicksand Design Studio.

Niyoshi is a qualitative researcher and writer who completed her Masters in Critical Writing from the Royal College of Art, London in 2018. Her thesis on the uptake of protective footwear for leprosy in India was shown at the International Leprosy Congress, Manila (2019), and shortlisted for the NTD Innovation Prize by the American Leprosy Mission (2019). Niyoshi has also worked on evidence-led IEC for suicide prevention and mental health in the past. This aligns with her longstanding interest in the question of linguistic equity, where she is constantly looking for ways to improve health and care access for those who don’t consider English their dominant language. Her concerns regarding culturally-sensitive communication were presented as a case study at the Global Forum on Bioethics in Research (2021). Niyoshi currently works with Quicksand Design Studio on their projects in the social sector with a special focus on health, and new technologies. Her writing has been featured by the Wellcome Collection, Fifty Two, and Sindroms to name a few publications.

Evelyn (Eve) Kamau (she/her) – Senior Director, DCT Strategy and Innovation, PPD part of Thermofisher Scientific

Eve is a Senior Director in the Digital and Decentralized Solutions unit of the clinical research group and the SME for home trial services. She has been a nurse for over 20 years, with both UK and international nursing experience. In addition to critical care, neurology, clinical trials, and community nursing experience, Eve has a special focus in decentralized clinical trials where she has helped support over 100 clinical trials, in the home environment over the past seven years.

Srushhti Trivedi (she/her) – Consultant | Educator | Ethicist, Amaris Consulting

Srushhti is currently working as a full-time consultant in the evidence review team at Amaris Consulting. She works in their Life science consulting where they support pharmaceutical clients in Drug reimbursement submissions. She is also an Ethics expert at Ethical Intelligence and advise on  developing AI ethics frameworks and policies and more for internal and external clients. She has a Master’s degree in bioethics from University of Toronto, Canada and Bachelor’s degree in Medical Biotechnology from Dr. D.Y. Patil Vidyapeeth, India. Lastly, her research interests include : exploring  the role of ethics in pharmaceutical industry, use of AI in healthcare and global health ethics.

Arianna Manzini (she/her) – Research Scientist, DeepMind.

Arianna is an ethicist and is very passionate about working in interdisciplinary teams to address complex societal challenges around technological advances. Arianna also has extensive experience in engaging the general publics in debates about technology and ethics, especially in health-related contexts. Before joining the Ethics Research Team at DeepMind, Arianna was Research Associate at the University of Bristol, where she collaborated with computer scientists and roboticists on a project on trustworthy autonomous systems. Arianna holds a PhD on ethical concerns around emerging technologies in autism genomics from the University of Oxford.

UKCEN 2023 Workshop on ‘Addressing Inequity in and through Clinical Ethics’

As one of our core values is collaboration, we have endeavoured to work with established organisations in UK bioethics to promote anti-racism. We were therefore delighted when, through my role as both a trustee of UKCEN and a member of the UKCEN 2023 organising committee, we were able to contribute to the organisation of the UKCEN 2023 pre-conference workshop. The theme – “addressing inequity in and through clinical ethics” – follows on from my growing interest in how clinical ethics support services (CESS) can also work to address healthcare disparities.

The discussions during the workshop revolved around two fictionalised cases, where “best interests” decisions needed to be made, in keeping with the UKCEN 2023 conference theme. The first case discussion, on the care of a pregnant patient, was led by Dr Louise Austin (Lecturer in Law, Cardiff University and Member, University Hospital of Wales Clinical Ethics Committee) and Dr Aisha Davies (GP and Co-Founder, Black Mothers Matter). This case focused specifically on access to care during pregnancy and considered the potential inequity that may (not) be evident through current methods of case consultation. In the case, a pregnant person’s capacity was being called into question as a result of perceived mental health issues. Amongst the issues discussed were whether and how to hear directly from patients during case consultation and how far CESS’ role in advocacy should extend. We also explored whether the patient actually lacked capacity, if the referral to the CESS was meant to serve the patient or the healthcare team, and whether the proposed treatment decision was being made in the patient’s best interests or in the healthcare team’s best interests. The case discussion ended with a reflection on how the composition of CESS (e.g., by gender, professional background, ethnicity) might affect ethical deliberation, and why it might be important to include social factors (e.g., ethnicity, migrant status) in referrals to CESS, so that socially sensitive and contextualised advice may be offered.

The second case explored the challenges posed by caring for so-called “difficult” patients, and how CESS can and should respond to requests for advice in these scenarios. Here, the fictional patient at the centre of the referral undoubtedly lacked capacity – but the question was around whether patients, who lack capacity, can be blamed for their racist actions or behaviour. This led to a dialogue on the risk of harm to both healthcare staff and patients when racial abuse is encountered, and whether racially-based reassignment of staff is appropriate. The discussion, led by Ms Kumeri Bandara (PhD Candidate, University of Oxford) and Ms Rakeb Yoseph (Medical Student and Race and Ethnicity Advocate, Bristol Medical School EDI Forum), closed with reflections on how the advice offered by CESS is perceived externally. Though CESS are not decision-making bodies, it was suggested that clinical decision-makers are unlikely to go against the advice or recommendations offered by a body of ‘ethical experts’.

I had a number of goals as I planned this session. First, I wanted the speakers to come from a range of backgrounds, recognising that expertise comes from people with lived experience and does not always fit into typical academic hierarchies. Second, I wanted the workshop to be primarily case-based, as members of CESS are in their element when discussing challenging cases. Though these cases were fictional, they were based on the real-world experiences (through research, lived experience, clinical work, or CESS involvement) of each of the speakers. Third, I wanted to challenge members of CESS, to address their own unconscious biases in a way that was non-confrontational. Finally, I wanted the environment to feel safe, so participants could engage fully in what can be perceived as difficult or awkward topics of discussion. The afternoon was well received, and the feedback suggested that these goals were met. Indeed, the conversations around how CESS can and should address inequity continued into the evening drinks reception.

In addition to the four speakers, we would like to thank Dr Jo Hartland (Senior Lecturer, Bristol Medical School), for their contribution in planning the workshop. Following Dr Hartland’s guidance, we provided participants with a broad range of resources, to continue engaging with anti-racist ideas and principles after the workshop. This list of resources is provided below. We are also grateful to Professor Richard Huxtable, as co-chair of the UKCEN 2023 organising committee, for providing Black and Brown in Bioethics with the opportunity to run this workshop.

Further Resources

  • Wellcome Anti-Racist Principles and Toolkit (2022)
  • Netflix – “When They See Us”, “13th”
  • YouTube – Wellcome talk on “Decolonising Healthcare with Dr Annabel Sowemimo”
  • Podcasts – “Revisionist History” (Gladwell) “Invisible Women” (Criado-Perez), “Intersectionality Matters!” (Crenshaw)
  • Reading – “How to be an antiracist” (Ibram X. Kendi), “Why I’m no longer talking to white people about race” (Reni Eddo-Lodge)