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- Convenors:
-
Joy Zhang
(University of Kent)
Camille Serisier (University for the Creative Arts)
Jill Shepherd (University of Kent)
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- Format:
- Combined Format Open Panel
Short Abstract:
Persistent difficulty engaging minorities in biobanking necessitates methodological innovations and a recalibration of priorities. Our panel welcomes research papers, visual exhibits, and creative demonstrations for broader public involvement in advancing biobanks as a catalyst for health equity.
Long Abstract:
Equitable public health outcomes hinge not only on robust infrastructures of bioeconomy, policy framework and competitive innovation work force, but also on the quality of participation from diverse communities. The ascendance of data science and AI-assisted medical research has prompted numerous nations to intensify their strategic policies and investments in fortifying the capabilities of biobanks.
However, it has also underlined a persistent failure to mobilise minority groups or marginalised communities into actively contributing to and, subsequently benefit from structural and scientific advantages. For example, in the UK, the racial disparity of donors for biobanks and its immense health impact has been characterised as a ‘Silent Crisis’ in public health. Yet ethnic-specific initiatives, while motivating community donations and specialised registries, can also reinforce racial distinctions, further perpetuating the racialisation of biomedicine that has historically deterred engagement among ethnic minority groups.
There is a pressing imperative for methodological innovations and a thoughtful recalibration of priorities to transform how health institutions and professionals engage with minority groups or marginalised communities. This is essential to evoke trusting and reciprocal partnership between minority/marginalised communities and health establishments to curate a biodatase that is inclusive and equitable for future collective health.
Co-convened by a sociologist, a natural scientist and an artist, this panel is at the confluence of creative methods for science communication, the democratization of science, and participation research within the broader domain of biobanking. It fosters the examination of theoretical underpinnings pertaining to imperative transformations, the practical means to actualize them, and empirical insights concerning the organisation and delivery of these transformative endeavors.
We invite conventional paper presentations, visual exhibitions or photography displays, as well as brief demonstrations of alternative creative methods that foster broader public engagement in advancing biobanks as a catalyst for health equity.
Accepted contributions:
Session 1Yaser Martini (All-Party Parliamentary Group For Ethnicity Transplantation and Transfusion)
Short abstract:
Please write to: yaser@teammargot.com with an email for me to submit a pdf copy
Long abstract:
OR click on this link to access the report online:
https://www.dropbox.com/scl/fi/7njpvvhcrib3dp4zv4obd/APPG-Report-Where-are-our-nation-s-donors.pdf?rlkey=f1y1mkvabvo5tyyrjriecclkn&dl=0
Thank you
Ros Williams (University of Sheffield)
Long abstract:
In clinical transplantation, tissue 'matching' is thought most likely between patients and donors of common 'ethnic ancestry' who are understood to be distantly related. "Mixed raced" people, whose ancestries confound distinctions of racial taxonomy, are thus problematic: bodily, mixed patients are more challenging to locate matching donors for because of their genetic 'rarity'; socially, they present a problem for conventional 'community'-based participation or ‘donor recruitment’ methods targeting minoritized spaces (e.g. traditionally Black churches). This is thought to be compounded by an apparent recent 'demographic boom' in mixed raced people in the UK and the country’s perceived 'mixed' ethnic future. As such, these genetically rare bodies are, contradictorily, increasingly common, leading to more frequent inability to find a match for mixed patients.
The mixed-raced body is seen, then, as problematic for participation work or recruitment efforts that vivify ideas of coherent racialized groups (e.g. the 'African Caribbean community'). But, I argue, it also stands to provide an epistemic reorientation away from the racialised thinking that has striated donor recruitment to date.
The paper analyses policy, social/traditional media coverage and ethnographic data related to mixed-raced blood stem cell donor recruitment work in the UK. It confronts how racialised logics of recruitment reproduce particular racialised ways of knowing bodies, and how the capacious notion of mixedness – with its attendant discourse of demographic futurity – is both a challenge and an opportunity to break with the dominant racialised framing of recruitment work.
Sean Blake
Short abstract:
In an effort to help raise awareness for the dire need of registered stem cell donors, I am proposing a unique photography series about people within varying environments with the common element of one ordinary red chair. The final result is a collection of portraits on Polaroids.
Long abstract:
The Untitled Chair Project is a unique photography portrait series to help raise awareness for the need for registered bone marrow donors around the world.
Started in 2O11 by photographer Sean Blake, the project has since gained a steady stream of social media followers and supporters, portrait participants and press coverage in 95 countries.
After losing a dear friend to leukemia many years ago and motivated by a newspaper article about an Arab's family’s plight for their own young daughter battling leukemia and their need for a matching donor. This photo series started from a need to creatively draw attention to this global issue.
What are the goals of The Untitled Chair Project?
Educate:
One of the things that has come to our attention in the pursuit of this project, is how many people have misconceptions, the wrong information or no information at all about what it means to be a donor. Educational information in all languages is essential in order to cross borders and cultural barriers. We would like to help bridge that gap.
Register:
We want to have as many donor drives as possible throughout our journey and encourage people to become informed and register with their local stem cell registry.
I have a PDF available that explains the project in detail. If interested, I'd like to share it with you.
Joy Zhang (University of Kent) Jill Shepherd (University of Kent) Camille Serisier (University for the Creative Arts) Rebecca Cassidy (University of Kent)
Short abstract:
This paper presents the authors' latest collaboration with black communities in the UK to combat the ‘Silent Crisis’, a persistent barrier to mobilise non-White communities into actively contributing to and, subsequently benefit from biobanks.
Long abstract:
The UK has been a global leader in the development and regulation of biobanks and bio-databases that facilitates clinical and laboratory access to tissue, blood samples, DNA and data. Yet the persistent barrier to mobilise non-White communities into actively contributing to and, subsequently benefit from structural and scientific advantages that the UK can offer constitutes a ‘Silent Crisis’.
Since 2023, we have conducted a number of engagement activities and focus group research in collaboration with black communities in Kent in England. We've experimented with innovative methods to enable and encourage conversations within and between communities about perceived skepticism, mistrust, hope and desire. This allow a more accurate understanding of the underlying hurdles for donation. We underline the centrality of the concept ‘relatedness’ in donor recruitment, and the tricky role it has played, both as a uniting and an alienating force within and between different ethnic communities. We argue that the building of a thick societal relatedness or what we term as ‘polyphonic relatedness’ offers a constructive guidance to overcome racial disparity in biomaterial donations.
Ian McGonigle (Maynooth University)
Short abstract:
GenomeAsia100K has investigated the genomic structure of Asian populations and has questioned the limits of ‘Asia.’ I also discuss public perceptions of genomics in Singapore.
Long abstract:
This presentation gives an overview of the work of GenomeAsia100K, a Singapore-based human genome project that has catalogued the major Asian ethnicities and provided new understandings about the boundaries of ethnic groups, group historical admixture, and thereby questions the limits ‘Asia’ in the context of human genomic ancestry. It also discusses survey research on public understandings and attitudes towards genomics in Singapore.