Genomics and Indigenous people
Journal of Political Power, 2024
A review of Emma Kowal, 'Haunting Biology: Science and Indigeneity in Australia', Duke University... more A review of Emma Kowal, 'Haunting Biology: Science and Indigeneity in Australia', Duke University Press, 2023.
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Human Genetics and Genomics Advances , 2022
The ethics of the scientific study of Ancestors has long been debated by archaeologists, bioanthr... more The ethics of the scientific study of Ancestors has long been debated by archaeologists, bioanthropologists, and, more recently, ancient DNA (aDNA) researchers. This article responds to the article ''Ethics of DNA research on human remains: five globally applicable guidelines'' published in 2021 in Nature by a large group of aDNA researchers and collaborators. We argue that these guidelines do not sufficiently consider the interests of community stakeholders, including descendant communities and communities with potential, but yet unestablished, ties to Ancestors. We focus on three main areas of concern with the guidelines. First is the false separation of ''scientific'' and ''community'' concerns and the consistent privileging of researcher perspectives over those of community members. Second, the commitment of the guidelines' authors to open data ignores the principles and practice of Indigenous Data Sovereignty. Further, the authors argue that involving community members in decisions about publication and data sharing is unethical. We argue that excluding community perspectives on ''ethical'' grounds is convenient for researchers, but it is not, in fact, ethical. Third, we stress the risks of not consulting communities that have established or potential ties to Ancestors, using two recent examples from the literature. Ancient DNA researchers cannot focus on the lowest common denominator of research practice, the bare minimum that is legally necessary. Instead, they should be leading multidisciplinary efforts to create processes to ensure communities from all regions of the globe are identified and engaged in research that affects them. This will often present challenges, but we see these challenges as part of the research, rather than a distraction from the scientific endeavor. If a research team does not have the capacity to meaningfully engage communities, questions must be asked about the value and benefit of their research.
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Body & Society, 2022
Some Indigenous Australians have embraced developmental origins of health and disease (DOHaD) and... more Some Indigenous Australians have embraced developmental origins of health and disease (DOHaD) and epigenetic discourses to highlight the legacies of slow violence in a settler colonial context. Despite important differences between Indigenous and scientific knowledges, some Indigenous scholars are positioning DOHaD and epigenetics as a resource to benefit their communities. This article argues that time plays a crucial role of brokering disparate knowledge spaces in Indigenous discourses of postgenomics, with both Indigenous cosmological frames and DOHaD/epigenetics centring a circular temporal model. Drawing on interview data with scientists who work in Indigenous health, and broader ethnographic work in Indigenous Australian contexts where epigenetics is deployed, this article explores how different circularities of space and time become entangled to co-produce narratives of historical trauma. We use the concept of biocircularity to understand the complex ways that Indigenous and ...
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The Palgrave Handbook of the Anthropology of Technology, 2022
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Human Organization, 2020
The increasing popularity and availability of genetic testing has the potential to play into deba... more The increasing popularity and availability of genetic testing has the potential to play into debates surrounding forms of Aboriginal and Torres Strait Islander land ownership known as “native title.” This paper draws on research with applied anthropologists working in native title, and a review of descriptions of native title holders in existing determinations, to address three key questions: Are native title holders and claimants interested in using genetic genealogy for claiming native title or resolving membership disputes? If so, can this biotechnology offer them the kind of information they seek? And finally, does the legal framework allow or support its use for these purposes? Our findings highlight the importance of disseminating current information about genetic genealogy among Indigenous Australians and having frank conversations about the opportunities and limits of genetic technologies in this context.
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American Anthropologist, 2019
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Science, Technology and Human Values, 2019
A history of colonization inflicts psychological, physical, and structural disadvantages that end... more A history of colonization inflicts psychological, physical, and structural disadvantages that endure across generations. For an increasing number of Indigenous Australians, environmental epigenetics offers an important explanatory framework that links the social past with the biological present, providing a culturally relevant way of understanding the various inter-generational effects of historical trauma. In this paper, we critically examine the strategic uptake of environmental epigenetics by Indigenous researchers and policy advocates. We focus on the relationship between epigenetic processes and Indigenous views of Country and health—views that locate health not in individual bodies but within relational contexts of Indigenous ontologies that embody interconnected environments of kin/animals/matter/ bodies across time and space. This drawing together of Indigenous experi- ence and epigenetic knowledge has strengthened calls for action including state-supported calls for financial reparations. We examine the consequences of this reimagining of disease responsibility in the context of “strategic bio- logical essentialism,” a distinct form of biopolitics that, in this case, incor- porates environmental determinism. We conclude that the shaping of the right to protection from biosocial injury is potentially empowering but also has the capacity to conceal forms of governance through claimants’ identifi- cation as “damaged,” thus furthering State justification of biopolitical inter- vention in Indigenous lives.
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Journal of Anthropological Sciences, 2019
The sequencing of the human genome at the turn of the 21 st century was hailed as revealing the o... more The sequencing of the human genome at the turn of the 21 st century was hailed as revealing the overwhelming genetic similarity of human groups. Scholars of genomics have critiqued the subsequent persistence of race-based genetic science, but were reassured that the wide availability of gene sequencing would end the use of race as a proxy for genetic difference. Once an individual's whole gene sequence could be read, they hoped, their ethnoracial classification would become redundant. At the same time, genome science was recognising that the differences between human genomes went beyond the genome sequence to the structure of the genome itself. 'Structural variation' between genomes, including insertions, deletions, translocations, inversions, and copy number variations, mean that the 'universal' reference genome used for genome sequencing is not so universal. As conventional, 'short-read' sequencing wrongly assumes that all genomes have the same structure, significant genetic variation can be missed. This paper examines the twin phenomena that have been posed as a solution to the biases of short-read sequencing: 'long-read' sequencing and 'ethnicity-specific reference genomes'. Long-read sequencing is a method of generating a genome sequence that can be assembled de novo rather than relying on the reference genome. In recent years, a number of countries including China, Korea, and Denmark have used long-read sequencing and de novo assembly to develop 'national' reference genomes. Our analysis of one ethnicity-specific reference genome project, the Korean Reference Genome (KOREF), finds that it unduly emphasises the importance of population structural variation, framed in nationalist terms, and discounts the importance of individual structural variation. We argue that the intellectual labour required to make a Korean reference genome a coherent concept works to extend the horizon of race, prolonging the temporality of the 'meantime' in which race remains a seemingly valid concept in genomic science.
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Ethnic and Racial Studies, 2019
In the past half century, the Indigenous Australian population has grown at a far faster rate tha... more In the past half century, the Indigenous Australian population has grown at a far faster rate than can be explained by births alone, and has come to include more western-educated people living in the south-east of the country. Demographers attribute much of this growth to people identifying as Indigenous later in life. Social research has examined the phenomenon of “New Identifiers” in the United States and Canada, where similar shifts in indigenous populations have been observed. This paper is the first to examine the issue in an Australian context. We analyse 33 interviews with people who have come to believe they have Indigenous Australian ancestry later in life, and identify factors that encourage members of this group to subsequently identify as Indigenous, or
discourage them from doing so.
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Medical Journal of Australia, 2019
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New Genetics and Society, 2019
Social scientists have found that direct-to-consumer genetic ancestry testing can increase the i... more Social scientists have found that direct-to-consumer genetic ancestry testing can increase the influence of genetic notions of identity, but has a varying effect on test takers depending on the individual, social and political context. This paper considers the potential effects of genetic ancestry testing on the Indigenous peoples of Australia. We first review the effects of genetic ancestry testing in different populations, particularly Native Americans. We then draw on a comparative analysis of indigenous political structures in the United States and Australia in order to assess the likely impact of genetic ancestry testing in Australia in the coming years. The most salient point of difference is Australia’s relatively broader definition of Indigenous status. Due to this difference, genetic ancestry testing is likely to have minimal social impact among those who already identify as Indigenous, but may significantly impact those who discover genetic ancestry and do not yet identify as Indigenous.
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Journal of Anthropological Sciences, 2018
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Medicine Anthropology Theory seeks to ‘open up’ medical anthropology by ‘embracing the concept of... more Medicine Anthropology Theory seeks to ‘open up’ medical anthropology by ‘embracing the concept of open access’ (Moyer and Nguyen 2014). The hope is that making all content free and easily accessible on the MAT website will engage broader publics, including scholars at international institutes who are unable to afford the access fees of for-profit journals; scholars without a formal affiliation to a library, such as underemployed academics and recent graduates on the job market; and practitioners and advocates in the communities where we work.
As a journal focused on health and medicine, there are, however, a number of ethically and politically complex concerns raised by the widespread dissemination of MAT’s contents. The imperative of ‘openness’, which resonates with efforts to make data ‘open’ within biomedical sciences (and related institutions that fund, publish, or grant ethical approval), can raise problems for medical anthropologists who work in communities where patient anonymity and vulnerability is a concern, as well as those working in places where indigenous property rights destabilize ‘the good’ of democratic distribution. Since navigating the nuances of openness and access is central to the practice of carrying out social science in the fields of health and medicine, we have gathered together six scholars who have worked in medical settings, and asked them to discuss frictions surrounding the dissemination of knowledge they have encountered in their research.
A word about the ‘we’ here. This conversation was initiated by Emily Yates-Doerr, and curated in collaboration with Jenna Grant (Reviews Editor at MAT). We have asked the contributors to reflect on how ‘open access’ – in the broadest sense of the term – plays out in their research and writing. Our hope is that this collectively written document will enrich the open-access conversation, as it unfolds both within and beyond the field of medical anthropology. The aim is not to critique the current momentum of open access as much as it is to raise and think through some of its complexities.
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Public participation in medical research and biobanking is considered key to advances in scientif... more Public participation in medical research and biobanking is considered key to advances in scientific discovery and translation to improved health care. Cultural concerns relating to blood have been found to affect the participation of indigenous peoples and minorities in research, but such concerns are rarely specified in the literature. This article presents a review of the role of blood in Australian Aboriginal cultures. We discuss the range of meanings and uses of blood in traditional culture, including their use in ceremonies, healing, and sorcery. We draw on more recent literature on Aboriginal Australians and biomedicine to consider how traditional beliefs may be changing over time. These findings provide an empirical basis for researchers and bioethicists to develop culturally grounded strategies to boost the participation of Aboriginal Australians in biomedical research. They also serve as a model for integrating anthropological literature with bioethical concerns that could be applied to other indigenous and minority groups.
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Blood samples collected from members of
indigenous communities in the mid-20th century by
scienti... more Blood samples collected from members of
indigenous communities in the mid-20th century by
scientists interested in human variation remain
frozen today in institutional repositories around the
world. This article focuses on two such
collections—one established and maintained in the
United States and the other in Australia. Through
historical and ethnographic analysis, we show how
scientific knowledge about the human species and
ethical knowledge about human experimentation are
coproduced differently in each national context over
time. Through a series of vignettes, we trace the
attempts of scientists and indigenous people to
assemble and reassemble blood samples, ethical
regimes, human biological knowledge, and
personhood. In including ourselves—a U.S.
historian of science and an Australian
anthropologist—in the narrative, we show how
humanistic and social scientific analysis contributes
to ongoing efforts to maintain indigenous samples.
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Curated by Emily Yates-Doerr, Jenna Grant
Contributors: Emma Kowal, Todd Meyers, Eugene Raikhel, ... more Curated by Emily Yates-Doerr, Jenna Grant
Contributors: Emma Kowal, Todd Meyers, Eugene Raikhel, Peter Redfield, Sharon Abramowitz, Barbara Andersen, and Eileen Moyer
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Nature, 2017
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Nature, 2017
Aboriginal Australians represent one of the longest continuous cultural complexes known. Archaeol... more Aboriginal Australians represent one of the longest continuous cultural complexes known. Archaeological evidence indicates that Australia and New Guinea were initially settled approximately 50 thousand years ago (ka); however, little is known about the processes underlying the enormous linguistic and phenotypic diversity within Australia. Here we report 111 mitochondrial genomes (mitogenomes) from historical Aboriginal Australian hair samples, whose origins enable us to reconstruct Australian phylogeographic history before European settlement. Marked geographic patterns and deep splits across the major mitochondrial haplogroups imply that the settlement of Australia comprised a single, rapid migration along the east and west coasts that reached southern Australia by 49–45 ka. After continent-wide colonization, strong regional patterns developed and these have survived despite substantial climatic and cultural change during the late Pleistocene and Holocene epochs. Remarkably, we find evidence for the continuous presence of populations in discrete geographic areas dating back to around 50 ka, in agreement with the notable Aboriginal Australian cultural attachment to their country.
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discourage them from doing so.
As a journal focused on health and medicine, there are, however, a number of ethically and politically complex concerns raised by the widespread dissemination of MAT’s contents. The imperative of ‘openness’, which resonates with efforts to make data ‘open’ within biomedical sciences (and related institutions that fund, publish, or grant ethical approval), can raise problems for medical anthropologists who work in communities where patient anonymity and vulnerability is a concern, as well as those working in places where indigenous property rights destabilize ‘the good’ of democratic distribution. Since navigating the nuances of openness and access is central to the practice of carrying out social science in the fields of health and medicine, we have gathered together six scholars who have worked in medical settings, and asked them to discuss frictions surrounding the dissemination of knowledge they have encountered in their research.
A word about the ‘we’ here. This conversation was initiated by Emily Yates-Doerr, and curated in collaboration with Jenna Grant (Reviews Editor at MAT). We have asked the contributors to reflect on how ‘open access’ – in the broadest sense of the term – plays out in their research and writing. Our hope is that this collectively written document will enrich the open-access conversation, as it unfolds both within and beyond the field of medical anthropology. The aim is not to critique the current momentum of open access as much as it is to raise and think through some of its complexities.
indigenous communities in the mid-20th century by
scientists interested in human variation remain
frozen today in institutional repositories around the
world. This article focuses on two such
collections—one established and maintained in the
United States and the other in Australia. Through
historical and ethnographic analysis, we show how
scientific knowledge about the human species and
ethical knowledge about human experimentation are
coproduced differently in each national context over
time. Through a series of vignettes, we trace the
attempts of scientists and indigenous people to
assemble and reassemble blood samples, ethical
regimes, human biological knowledge, and
personhood. In including ourselves—a U.S.
historian of science and an Australian
anthropologist—in the narrative, we show how
humanistic and social scientific analysis contributes
to ongoing efforts to maintain indigenous samples.
Contributors: Emma Kowal, Todd Meyers, Eugene Raikhel, Peter Redfield, Sharon Abramowitz, Barbara Andersen, and Eileen Moyer
discourage them from doing so.
As a journal focused on health and medicine, there are, however, a number of ethically and politically complex concerns raised by the widespread dissemination of MAT’s contents. The imperative of ‘openness’, which resonates with efforts to make data ‘open’ within biomedical sciences (and related institutions that fund, publish, or grant ethical approval), can raise problems for medical anthropologists who work in communities where patient anonymity and vulnerability is a concern, as well as those working in places where indigenous property rights destabilize ‘the good’ of democratic distribution. Since navigating the nuances of openness and access is central to the practice of carrying out social science in the fields of health and medicine, we have gathered together six scholars who have worked in medical settings, and asked them to discuss frictions surrounding the dissemination of knowledge they have encountered in their research.
A word about the ‘we’ here. This conversation was initiated by Emily Yates-Doerr, and curated in collaboration with Jenna Grant (Reviews Editor at MAT). We have asked the contributors to reflect on how ‘open access’ – in the broadest sense of the term – plays out in their research and writing. Our hope is that this collectively written document will enrich the open-access conversation, as it unfolds both within and beyond the field of medical anthropology. The aim is not to critique the current momentum of open access as much as it is to raise and think through some of its complexities.
indigenous communities in the mid-20th century by
scientists interested in human variation remain
frozen today in institutional repositories around the
world. This article focuses on two such
collections—one established and maintained in the
United States and the other in Australia. Through
historical and ethnographic analysis, we show how
scientific knowledge about the human species and
ethical knowledge about human experimentation are
coproduced differently in each national context over
time. Through a series of vignettes, we trace the
attempts of scientists and indigenous people to
assemble and reassemble blood samples, ethical
regimes, human biological knowledge, and
personhood. In including ourselves—a U.S.
historian of science and an Australian
anthropologist—in the narrative, we show how
humanistic and social scientific analysis contributes
to ongoing efforts to maintain indigenous samples.
Contributors: Emma Kowal, Todd Meyers, Eugene Raikhel, Peter Redfield, Sharon Abramowitz, Barbara Andersen, and Eileen Moyer
both minority and majority children and young people learn about and
negotiate racial, ethnic and cultural diversity. This article extends the
existing ethnic-racial socialisation literature in three significant ways:
(1) it explores ways children make sense of their experiences of racial
and ethnic diversity and racism; (2) it considers ways children identify
racism and make distinctions between racism and racialisation; and
(3) it examines teacher and parent ethnic-racial socialisation messages
about race, ethnicity and racism with children. This research is based on classroom observations, semi-structured interviews and focus groups with teachers, parents and students aged 8–12 years attending four Australian metropolitan primary schools. The findings reveal that both teachers and parents tended to discuss racism reactively rather than proactively. The extent to which racism was discussed in classroom settings depended on: teachers’ personal and professional capability; awareness of racism and its perceived relevance based on student and community experiences; and whether they felt supported in the broader school and community context. For parents, key drivers for talking about racism were their children’s experiences and racial issues reported in the media. For both parents and teachers, a key issue in these discussions was determining whether something constituted either racism or racialisation. Strategies on how ethnic-racial socialisation within the school system can be improved are discussed.
This project examines how to foster provision of culturally relevant information to Indigenous communities enabled by broadband connectivity. The research focuses upon the network of 70 touch screen kiosks installed at key community locations in remote, regional and urban communities operated by HITnet. The HITnet network is designed to address 'information disadvantage' by using IT to improve and maintain community connectedness, digital development and digital social inclusion.
Content for the information kiosks focuses on a range of critical Indigenous health issues including sexual health, cancer, mental health and nutrition. The kiosks provide a gateway to tailor-made interactive content for low literacy and inexperienced technology users with the program attracting over 100,000 users in 2012.
Currently, the kiosks face bandwidth constraints. Higher bandwidth made available via broadband creates the potential to increase community participation in content creation, including the local upload of rich media content such as video.
This research project aims to assess current user practice around the kiosks to consider what features contribute to a successful interaction, such as physical placement, digital literacy and the relevance of the content. Linked to this is how the kiosks can be adapted to meet the evolving and diverse needs of Indigenous people, particularly, the potential for a transition from kiosk as information delivery system to digital community hub enabling new possibilities for local community co-creation/co-management of content.
majority children and young people learn about and negotiate racial, ethnic, and cultural diversity, processes known as ethnic-racial socialization. A critical gap within the field of ethnic-racial socialization is a systematic literature review that includes a diverse range of population groups. The primary goal of this paper is to systematically review research over the past 30 years that has examined ethnic-racial socialization processes for both minority and majority children and young people. Studies (n = 92) that included implicit or explicit ethnic-racial socialization as a primary outcome variable along with examination of racism/discrimination, intergroup contact and/or cross-cultural interactions were reviewed. Our main findings highlight that the majority of studies continue to focus on the ethnic-racial socialization of African American children by parents. However, emerging studies involving different ethnic-racial and cultural groups demonstrate the need to
consider how multiple social and environmental factors and multiple influential agents differentially impact on the types of messages used with children and young people. Implications
for future research, in relation to the adoption of multi-level frameworks and understanding the contribution of multiple agents across a range of contexts, are discussed.