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- Convenors:
-
Lorenzo Beltrame
(University of Trento)
Christine Hauskeller (University of Exeter)
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- Stream:
- Tracks
- Location:
- 112a
- Sessions:
- Saturday 3 September, -
Time zone: Europe/Madrid
Short Abstract:
The track explores the interplay between different configurations of biobanks and the participation of individuals, focusing on the resulting variable forms of biovalue creation and the shaping of subjectivities and identities of the individuals involved
Long Abstract:
Biobanks are central institutions in the infrastructure of contemporary biomedicine. They collect, test, store and provide a variety of different tissues, samples and bioinformation for research, therapy and drug development. Biobanks can be small local facilities or part of large internationally operating networks. Some are commercial, others voluntary for public use and increasingly both forms of bioeconomy intersect. In recent years, new types of biobanks were established, founded and/or supported by patient groups.
In this track we invite proposals that look specifically at the interaction between the individuals, families, and patient groups who provide body tissues or data to biobanks. The influence of these agents on the sector needs an in depth scrutiny, because individuals make choices about whether to participate and how in biobanking - from the collection and storage of stem cells (from cord blood, amniotic fluid, menstrual blood etc.) to that of body samples for genomics research. The way individuals interact with biobanks shapes biomedicine, and how the different kinds of biobanks are set up and function.
This track aims to explore how these choices, and the promises and incentives biobanks put forth shape both the economic forms of biovalue creation and the identities of private individuals who contribute.
We welcome especially empirically oriented contributions that discuss:
various involvements of patients, citizens and other non-expert actors in different configurations of biobanks
subjectivities and collectives shaped by the involvement in biobanking activities
novel forms of biosocial participation in both public and commercial biobanking or hybrid configurations
Accepted papers:
Session 1 Saturday 3 September, 2016, -Paper short abstract:
BioResource is a biobank that facilitates recruitment of research participants with specific traits. This paper explores how future (bio)value, community and social responsibility intertwine in the processes of planning and practicing engagement with different publics in a novel biobank.
Paper long abstract:
The National Institute for Health Research (NIHR), the research arm of the UK National Health Service, is investing in research infrastructures. One such infrastructure, the NIHR BioResource, on the surface appears to be a typical biobank - it stores biological samples and the derived data for research purposes. However, there is at least one crucial difference, the banked resource is not the samples and data but the potential, stratified, research participants. BioResource staff recruit those with and without health problems as volunteers for future research studies. These volunteers provide biological samples containing genetic information which is sequenced and, along with clinical data, databased. Researchers from academia and commercial pharmaceutical industries can then apply to the BioResource for volunteers that meet specific genotypic or phenotypic criteria and invite them to take part in research. As such, the BioResource offers a case study of a novel form of biobank participation which is, in part, dependent on the successful recruitment of volunteers and the development and nurturing of a relationship between bank and these individuals. Using participant observation and semi-structured interviews with those involved in the engagement process, this paper explores how notions of future (bio)value and social responsibility along with the creation of a volunteers "community" intertwine in the processes of planning and practicing BioResource engagement for different publics. This paper contributes to extant STS literature by providing an insight into a different configuration of biosocial participation and its implications for the future of personalised medicine.
Paper short abstract:
We draw on a body of original community engagement research to explore the phenomenon of being an “unwitting donor” to a legacy collection biobank. We explore how this collective reacted to learning of their involvement and policy implications in light of high profile biobanking controversies.
Paper long abstract:
How do individuals respond to the potentially unsettling news that they (or their children) are part of a state managed research biobank? Does the term 'donor' apply in the relevant sense of the word to individuals who had no involvement in the decision to contribute their biospecimen to a biobank? This presentation will use empirical findings from several community engagement efforts aimed at a large and diffuse public consisting of unwitting (unconsented) donors to a state-run biobank comprised of residual newborn screening bloodspots spanning 26 years in the state of Michigan, USA. We will explore some of the most common cognitive and affective reactions that 'donors' expressed upon learning of their 'involvement' in this biobank and how these responses are aligned and misaligned with what the biobank itself anticipated both in its policies and practices. The existence of legacy collections such as this point to the creation of a new type of donor class, "unwitting donors" who, although empowered to opt-out, must first become aware that they are involved. State-wide surveys indicate that after six years of operation, the public remains largely ignorant of its existence or their involvement wit this biobank. How do members of this collective of "unwitting donors" view the biobank and their subject-position vis-à-vis the state institutions that govern it? The presentation will close with a reflection on the voices of the citizens we engaged in light of high profile biobank controversies and ongoing policy debates regarding the ethics and governance of biobanks in the US.
Paper short abstract:
By analysing donor recruitment practices and how cord blood is materially processed both in public and private UCB banking, this paper develops a new and critical notion of social embeddedness of UCB biovalue exploitation in emergent forms of motherhood and family relations
Paper long abstract:
Umbilical cord blood (UCB) is collected at birth and stored in biobanks for being used as a source of hematopoietic stem cells. Two main models of UCB banking are in place: a system of public UCB banks collecting and distributing this tissue for healthcare needs and a sector of commercial UCB banks offering to mothers and parents the opportunity to privately store the UCB of a newborn for future possible family uses. UCB banking thus represents a paradigmatic case of the existence of two different bioeconomies: a public redistributive economy (based on free donations) and a market economy of private biomedical services. In the bioethics literature, the different biovalues attributed to UCB (as public resource vs private good) are linked to a moral discourse regarding the embeddedness of the two UCB bioeconomies. While public banking is embedded in social relations of solidarity, cohesion and thus promotes the common good; private banking appears as disembedded and substituting social relations with impersonal market transactions. By analysing the practices of donor recruitment, and in particular how UCB is materially processed in both public and private banking, this talk shows how this discourse adopts a notion of social embeddedness that is empirically and analytically untenable. I focus on emerging forms of motherhood and family relations involved in the management of UCB, to argue for a new and critical notion of social embeddedness of UCB biovalue exploitation in both public and private banking
Paper short abstract:
This paper investigates the processes of participating in the largest privately owned autism genomic database. It examines the various subjectivities and collectivities shaped through participation and the anticipated biovalue generated through these emergent biosocial collectives.
Paper long abstract:
This paper investigates the social and scientific processes involved in participating and utilizing the Simons Simplex Collection (SSC), the largest privately owned autism genomic database. The SSC was funded and established by billionaires Jim and Marilyn Simons who have a daughter on the autism spectrum. The SSC consists of immortalized blood and comprehensive clinical evaluations of over 2,600 simplex families, each of which has one child affected with autism and unaffected parents and siblings. Based on interviews with 23 sets of parents who participated in the SSC and a content analysis of SSC promotional materials, newsletters, and scientific publications, this paper examines the various reasons families participated in the SSC, the subjectivities and collectivities shaped through their participation and continued participation through the virtual SSC Interactive Autism Network (SSC IAN), and the anticipated biovalue generated through these emergent biosocial collectives for both parents and scientists. For parents, the SSC provided access to a gold standard evaluation and an opportunity to be part of a national research endeavor designed to identify genetic causes of autism. For scientists, the SSC offered renewed expectations in alternative genomic explanations of autism, especially after failing to find a major autism gene. Further, this paper reveals how the SSC IAN serves as a new model of participation designed to not only create a virtual space for families to remain connected and engaged in the research process, but also a mechanism for scientists to maintain access to families whose data is the primary source of knowledge production.
Paper short abstract:
A case-study involving first-time parents and their decision-making process on the preservation of the umbilical cord stem cells focuses on how they handle scientific notions, perceive private and public banks, project the decision in the future and ponder the uncertainty and the emotions attached.
Paper long abstract:
In a context of no consensus among specialists, when their children are born, parents must decide if they want the umbilical cord cells cryopreserved in a private bank, donated to a public bank or discarded as waste and that decision is based upon complex scientific notions.
We intend to show how parents make this decision: how they handle scientific notions and the opinion of specialists, how they perceive private and public banks, how they project this decision in the future and how they ponder the uncertainty and the emotions attached.
Based on the theoretical principles of public understanding of science and the concepts of trust, risk and public uptake of science, a qualitative study was conducted, consisting of interviews with couples, parents for the first time, with different qualifications in life sciences and that made different decisions. The WebPages of the private banks were also analyzed.
The results show us that this decision is multidimensional, involving emotional and financial factors, as well as the scientific arguments. Parents value scientific knowledge and the experts, although they are sceptical of the information provided by the private banks. The qualifications in life sciences seem to have a determinant role in this decision-making process so that the decision is made by the element of the couple more qualified in this area. The results also suggest that, when facing an uncertain future, "faith" in the development of science and technology is important for the parents that chose to cryopreserve their child's cells.