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- Convenors:
-
Tessa Moll
(University of the Witwatersrand)
Roos Metselaar (University of Amsterdam)
Andrea Whittaker (Monash University)
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- Format:
- Traditional Open Panel
- Location:
- HG-05A24
- Sessions:
- Wednesday 17 July, -, -
Time zone: Europe/Amsterdam
Short Abstract:
This panel explores expressions of social (dis)connection; how the boundaries between the ‘like’ and the ‘unlike’ are enacted in various ways; and how familial is measured, contested, or (re)defined in biomedical work, research, and technologies.
Long Abstract:
This panel problematizes assumptions of genetic primacy in biomedicine and biomedical technologies. A focus upon practices within assisted reproductive technologies and emerging postgenomic knowledges demonstrates how genetics, as a preeminent marker of kin and connection, is being remade, transformed, and in some cases ignored all together. In technological interventions such as donor matching practices, organ transplantation, personalized medicine, blood donation and direct-to-consumer ancestry testing, boundaries between the ‘like’ and the ‘unlike’; between ‘sameness’ and ‘not too different’ are enacted in various ways and measured, contested, or (re)defined. At the same time, postgenomic research is increasingly destabilizing the significance of genes. In epigenetics, shared environments, via food, collective trauma, or toxins, can induced embodied similarities, and gestation, even in the absence of genetic ties as in surrogacy, can potentially extend kinship beyond the nuclear family. STS analysis of microbiome research points to our intimate and embodied connections with nonhuman forms of life.
This panel is an opportunity to engage across multiple ethnographic particularities and forms of science and technology to speak to the ways that social connections are (re)made, delineated, and distinguished. This panel welcomes papers across social sciences and STS on the making of resemblance, connection, kinship, and relatedness and practices toward the defining of boundaries between the familial and the not, kin and not kin, in biomedical work, research, and technologies.
Accepted papers:
Session 1 Wednesday 17 July, 2024, -Paper short abstract:
My paper argues that the oppressive kinship and gender norms underlying recruitment of uterus donors ought to be challenged to make way for a socially disruptive future of uterus transplantation (UTx).
Paper long abstract:
Uterus transplantation (UTx) is a surgery in which a uterus from a live or deceased donor is transferred to a recipient with absolute uterine factor infertility (AUFI) to enable the latter to experience pregnancy. Most surgeries thus far have utilised live donors due to greater availability and ease of planning. As it stands, however, live donor recruitment practices for UTx reinforce oppressive kinship and gender normativities by idealizing mother-to-daughter donations, or otherwise calling upon women whose uterus has already been ‘used’ for childbearing. Transitioning transgender men or women who do not wish to ever gestate, on the other hand, are entirely excluded as potential uterus donors, even though they may otherwise be eligible and interested in doing so. I thereby argue that the kinship and gender norms underlying donor recruitment practices ought to be challenged, and expanded, if we are to transform the innovation of UTx into a more socially just - and socially disruptive - practice.
Paper short abstract:
Presenting early findings from the field, this paper explores how scientists working on the Artificial Placenta Technology socio-materially enact ‘biology’, ‘intimacy’, and ‘familial bonding’, in their everyday work.
Paper long abstract:
The Artificial Amniotic Sac and Placenta Technology (AAPT) – also known as the Artificial Womb (AWT) or the Artificial Placenta Technology (APT) – is currently under pre-clinical research and development in laboratories across the world. This technology seeks to improve the conditions of perinatal and neonatal care; aiming to increase the chances of survival for premature babies born before 28 weeks of gestation, through an enforced continuation of the physiological foetal state. In so doing, this technology promises to challenge not only how foetuses and neonates are socio-materially enacted, possibly blurring the boundaries between the two, but it also raises questions around the enactments of birth, kinship, personhood, etc.
Drawing upon recent ethnographic research with scientists working on the development of the Artificial Placenta Technology in the Netherlands, I will present early findings on how actors within the field socio-materially enact ‘biology’, ‘intimacy’, and ‘familial bonding’, in conjunction with the technology in question. I will seek to bring forth how the ‘making’ of the Artificial Placenta Technology allows for a simultaneous remaking, transformation, or maintenance of the ways in which biology, artificiality, reproduction, as well as kinship are performed. Given my focus, within recent fieldwork, on the research environments where this technology is being developed, I will also highlight how intimacy, care, and collegial bonding is enacted within and outside laboratories, in meeting rooms, and in other work settings. In so doing, I will reflect upon how such practices are rendered ‘visible’ within these particular spaces.
Paper short abstract:
My presentation focuses on embryo donation matching practices of Canadian families built thanks to embryo donation by analyzing how boundaries between the ‘like’ and the ‘unlike’ are contested and (re)defined by IVF specialists, embryo donors and receivers.
Paper long abstract:
The Canadian Assisted Human Reproduction Act does not explicitly mention embryo donation, as it does for sperm and eggs. However, it permits patients to provide consent for different provisions involving already created embryos: from enhancement of assisted reproduction techniques to third-party reproductive treatments. In Canada, compared to other IVF-related topics, little research has focused on embryos cryopreserved for potential future use. The existing literature analyzed making decisions about the fate of surplus cryopreserved embryos (Cattapan, Doyle 2015), and it also showed how embryo research regulation has been undertaken autonomously by medical and scientific professionals (Cattapan 2017).
This paper shows preliminary findings from ethnographic research on embryo donation in Canada. Very few Canadian clinics offer anonymous embryo donation programs, and there exists only one national agency which, on the contrary, promotes an open embryo donation model. Due to long waits and various bureaucratic difficulties, many Canadians often seek private matches through social media platforms, and some of these involve US donors and facilities. My presentation focuses on embryo donation matching practices of families built thanks to embryo donation by analyzing how boundaries between the ‘like’ and the ‘unlike’ are contested and (re)defined by IVF specialists, embryo donors and receivers. I show what kind of influence is exerted by fertility specialists in some situations, and what power dynamics are present in other situations. Particularly interesting will be comparing how genetic primacy - in this case represented by fully genetically related offspring - is problematized within anonymous donations, private matches, and open donations.
Paper short abstract:
I explore the challenges that mitochondrial DNA presents to kinship. I suggest that discussions of mitochondrial replacement reveal a continuing suspicion around the participation of third parties in reproduction because of the disruption to the model of the nuclear family that they may provoke.
Paper long abstract:
Mitochondrial replacement techniques (MRT) have generated debate about the constitution of genetic relatedness, and whether mitochondrial replacement leads to children with 3 (genetic) parents. This technology allows for the transfer of nuclear DNA from the egg of one woman, to the enucleated egg of another woman, in order to increase the chances of the resultant child being born with non-mutated mitochondrial DNA. Consequently, the resulting child contains genetic material of 3 people. What is difficult with mitochondrial DNA, though, is that, because it is non-combining, it is also shared by a multitude of *other* people.
In this paper, I explore the challenges that mitochondrial DNA presents to kinship models based on shared genetic information. I suggest that this technology, and the ways it has been regulated to date, reveals a continuing suspicion around the participation of third parties in reproduction because of the disruption to the model of the nuclear family that they may provoke.
Paper short abstract:
This paper will explore some experiences of people who have used genetic ancestry tools to explore Indigenous ancestry, including how concepts of culture, ancestry, blood memory, and inheritance are deployed to express the connection they feel to perceived or actual Indigenous ancestors.
Paper long abstract:
In recent decades, tens of thousands of Australians switch their identification from ‘non-Indigenous’ to ‘Indigenous’ in each national census (conducted every 5 years). This reflects a phenomenon whereby people who identify as non-Indigenous discover or suspect Indigenous ancestry, and subsequently identify as Indigenous. For an increasing number of people in this situation, direct-to-consumer genetic ancestry testing features in their identification journeys. For some, Indigenous ancestry is an incidental finding in testing that was conducted to answer other genealogical questions or purely for leisure. For others, family stories or rumours prompt them to use genetic ancestry testing that will often return a result showing no Indigenous ancestry. This paper will explore some experiences of people using genetic ancestry tools to explore Indigenous ancestry, including how concepts of culture, ancestry, blood memory, and inheritance are deployed to express the connection they feel to perceived or actual Indigenous ancestors.
Paper short abstract:
In Tanzania, efforts to teach the patterns of recessive inheritance had resulted in families with albinism realizing the impossibility of their biological kinship. Rather than upend families, however, this knowledge has counterintuitively destabilized the knowledge of genetics and doctors.
Paper long abstract:
In Tanzania, against the backdrop of years of targeted violence against a genetic minority, a burgeoning movement for the rights of people with albinism has led to proliferating questions about the patterns of recessive inheritance. In a context where two black parents can bear a seemingly “white” child and where biomedical and genetic epistemologies are far from hegemonic, bearing a child with albinism has long had the power to unmake and remake traditional Bantu notions of kinship. Recently, however, doctors and scientists working on behalf of albinism rights NGOs have aimed to reduce the stigma surrounding albinism by traveling to villages to teach the patterns of autosomal recessive inheritance. Embedded in their diagrams, charts, and brochures, of course, are biomedical cosmologies and their particular modes of ordering kinship, bodies, and personhood.
This talk centers ethnographic moments in the Mwanza region of Tanzania in which doctors and scientists informed families of the impossibility of their biological kinship—most often in cases where two parents with albinism had a child without albinism. In these instances, newfound knowledge of recessive inheritance patterns led to charged, public realizations of infidelity and lingering questions of paternity that doctors and scientists struggled to navigate, often through interpreters. While in most cases this knowledge did not upend families or destabilize notions of kinship, as activists both feared and predicted, family’s assuredness of their connection had the opposite impact, destabilizing the knowledge of geneticists and leading to cascading questions about what may not yet be known about albinism.
Paper short abstract:
Human practices and technologies of measuring kinship as genetic similarity, lived closeness or good care travel beyond species boundaries. This paper examines how competing kinship measurements are applied in projects of biodiversity conservation by considering the iconic case of the giant panda.
Paper long abstract:
Genetic testing appears as a powerful technology for measuring kinship. Yet, older practices such as drawing genealogies and assessing kinship as lived closeness or good care persist and new indicators keep emerging, e.g. for microbial or chemical kinship. Such overlapping and competing kinship measurements are not only applied in negotiations of human belonging that structure inequalities (Thelen and Lammer 2021) but continue to travel beyond species boundaries. This paper sets out to explore the generative and exclusionary force of kinship measurements in projects aimed at protecting species and conserving biodiversity. In particular, it explores the iconic case of the giant panda: a global symbol of conservation efforts and a national treasure of the People’s Republic of China. To maintain a healthy population of captive pandas, kinship is measured in a variety of ways. While the priority of genetic diversity has been translated into a studbook and a matchmaking algorithm that is supposed to reduce inbreeding, biologists who observe animal behaviour highlight affinity (and thus kinship as lived closeness) rather than descent when making recommendations for successful reproduction. Moreover, the value of genetic kinship is both challenged and reinforced when reproductive biologists promise to develop embryo transfer protocols in pseudo-pregnant female pandas by measuring kinship as embodied maternal care. Experts of different biological subdisciplines thus tap into the flow of resources mobilized to protect this valuable species. In turn, their various measurements reshuffle the value of giant pandas as a collective and which specific individuals are worthy of breathing and breeding.
Paper short abstract:
In this talk, I reflect on the ways in which DNA surprises may generate thorny kinship troubles in a country like China where filial piety (xiào) and the securing of male lineages have long shaped family life.
Paper long abstract:
In recent years, direct to consumer genetic testing oriented towards persons who might be curious about their ancestry or interested in their genetic health status have generated a host of 'unintended effects'. Police detectives have begun solving decades' old 'cold cases', family secrets (regarding use of a donor or extra-marital affair) have been revealed as so-called "DNA surprises", just as cases of fertility fraud have come to light exposing fertility doctors who deceitfully used their own sperm in the treatment of infertility decades ago. In this talk, I will reflect on the ways in which DNA surprises may generate thorny kinship troubles in a country like China where filial piety (xiào) and the securing of male lineages have long shaped family life. As one online response to an online recruitment add for sperm donors in Hunan province wondered: “What will you do if a group of children come to find you twenty years later?”