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Managing genetic disease using medically assisted reproductive technology is increasingly promoted as a feasible option, given revolutionary advances in genomics. Far less attention has been directed to the issue of whether there is equitable access to this option. Context and circumstance determine equitable access; however, reporting has drawn overwhelmingly from affluent Anglo-western populations in developed countries. The experiences of poorer, less educated subpopulations within affluent countries and populations in less developed countries are underreported. The ability of consumers to understand the opportunities and risks of medically assisted reproductive technology is likewise not well described in the literature despite significant technological complexity and evidence that genetic disease may be overrepresented within some disadvantaged population groups. Equity is achieved by identifying barriers and allocating appropriate resources to enable understanding and access. In the case of utilising medically assisted technology, social and power relationships, regulations, and the presumptions of authority figures and policymakers reduce equitable access. Physical or cultural marginalisation from mainstream health services may result in reduced access to genetic and prenatal testing, in-vitro fertilisation and genetic screening of embryos necessary for medically assisted reproduction. Cost and regulatory frameworks can likewise limit opportunities to engage with services. Moreover, the quality of the information provided to prospective users of the technology and how it is received governs understanding of prevention and inhibits adequately informed choice. Best practice care and adequately informed choice can only be achieved by conscientiously attending to these accessibility issues. Deep engagement with at-risk people and critical reflection on mainstream accepted standpoints is required. This paper outlines issues associated with engaging with medically assisted reproduction encountered by Aboriginal families living with Machado-Joseph Disease in some of the most remote areas of Australia. It is the right of these families to access such technologies regardless of where they live. Current barriers to access raise important questions for service providers with implications for practice as new technologies increasingly become part of standard medical care. [ABSTRACT FROM AUTHOR]

What are we talking about when we talk about decolonization? In this article, we differentiate between epistemic and reparative decolonizing approaches and then consider the differences between postcolonial and decolonial modes in two fields: histories of science and, separately, museology. Touring these fields leads us to affirm the need for scholars to consider the consequences of their allegiances to different critical movements and moments. Whatever it will mean to decolonize history, we conclude, it is both a necessary and necessarily relational enterprise with material and conceptual excesses to address. [ABSTRACT FROM AUTHOR]

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 intergenerational 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 experience 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 biological essentialism," a distinct form of biopolitics that, in this case, incorporates 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' identification as "damaged," thus furthering State justification of biopolitical intervention in Indigenous lives. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Precision medicine, also known as "personalised medicine", seeks to identify strategies in the prevention and treatment of disease informed by a patient's genomic information. This allows a targeted approach to disease identification with the intention of reducing the burden of illness. Currently, both the emerging field of precision medicine and the established field of clinical genetics are highly reliant on genomic databases which are fraught with inbuilt biases, particularly from sample populations. The inequities of most concern here are those affecting Aboriginal and Torres Strait Islander (or Zenadth Kes) peoples of Australia (hereafter, respectfully, Indigenous Australians). It is with this perspective that the Summer internship forINdigenous peoples inGenomics Australia endeavours to support the development of culturally appropriate genomic research with Indigenous Australians. We argue here that Indigenous researchers are best placed to create the informed, culturally safe environment necessary for Indigenous Australians to participate in genomic research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

An essay which examines the role of anthropological engagement with epigenetics that is embraced by Indigenous peoples in Australia, is presented. Topics covered include the distrust and antipathy felt by Indigenous peoples toward science, reasons behind the appeal of epigenetics to Indigenous Australians, outlook of anthropologists on the potential benefits and risks of epigenetics, and how anthropologists should approach epigenetic optimism among Indigenous Australians.

Drawing on international literature examining mismatch between racial appearance and racial identity, this paper analyses the subgroup of Indigenous Australians who have been identified, and self-identify, as ‘light-’, ‘fair-’, ‘pale-’ or ‘white-skinned’. We utilise the term ‘race discordance’ to describe the experience of regularly being attributed an identity that is different from how one personally identifies. In contrast to existing terms such as elective race, ethnic fraud and transracialism, race discordance does not seek to explain or judge the validity of identity claims that do not match perceived appearance. When unnoticed or unchallenged, ‘race discordance’ corresponds to ‘passing’. We propose the term ‘race refusal’ to describe instances when a person rejects the race they are ascribed to. In the case of white-skinned Indigenous Australians who are frequently assumed to identify as white, race refusal entails the refusal of whiteness. When light-skinned Indigenous people refuse whiteness, what are they refusing? In conversation with Audra Simpson’s notion of refusal of state recognition as an assertion of continued Indigenous sovereignty, we find that these particular micro-politics of race refusal demand rather than negate state recognition. We argue that identity refusal by pale-skinned Aboriginal people acts to disrupt histories of assimilation, white sociality and everyday racialisation while simultaneously reinforcing Australian recognition regimes. [ABSTRACT FROM PUBLISHER]

ABSTRACT 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. [ indigenous, biospecimens, science, genomics, postcolonial, ethics, cryopreservation] [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Time is one mechanism through which Indigenous-modern dichotomies are created and maintained and an enduring trope of difference in the settler-colonial imaginary. This article explores the strange temporality of indigeneity within 'progressive' discourses in Australia. Taking Johannes Fabian's concept of 'allochronism' as a point of departure, and drawing on ethnography of non-Indigenous people working in Indigenous health in the Northern Territory, I show how there is a kind of cultural Lamarckianism in operation. 'Western' individuals are seen to inherit the cumulative cultural knowledge, acquired over centuries, of germ theory and responsible alcohol consumption. By contrast, Indigenous people are seen to struggle with banking and infectious diseases because they have not had sufficient time to develop the appropriate cultural knowledge. Through the anthropomorphising of culture and the culturalisation of individuals, the Indigenous person/culture becomes the 40,000-year history of human occupation of the continent. I point to the limits of this settler-colonial imaginary and potential alternatives. [ABSTRACT FROM AUTHOR]

In the mid-20th century, scientists began to collect and freeze blood samples for a range of purposes. This article considers the broader implications of scientific freezing for conceptions of time and life by drawing on empirical research with scientists associated with a large collection of samples assembled from Indigenous Australians in the 1960s. We first review some key critiques of cryopreservation posed by Indigenous scholars and by science and technology studies. We then propose ‘cryopolitics’ as a concept to express the various political, ethical and temporal conundrums presented by the practice of freezing. We frame cryopolitics as a mode of Michel Foucault’s biopolitics. If biopolitical assemblages make live and let die, cryopolitical ones reveal the dramatic consequences of mundane efforts to make live and not let die. In our case study, we argue that frozen blood vacillates between two cryopolitical states, ‘latent life’ and ‘incomplete death’. Samples seen as latent life cannot be destroyed; samples understood as incomplete death require destruction. A state of incomplete death can be resolved through the return of blood samples to the Indigenous groups they were collected from, a process that has occurred in North America. Our cryopolitical analysis suggests another potential resolution: reviving a form of latent life aligned with futures envisaged by Indigenous communities themselves. [ABSTRACT FROM PUBLISHER]

An introduction is presented in which the editors discuss various reports within the issue on topics including the need to recognize the role of an ethics of care in shaping the practices of drug users, an approach to public engagement in science policy in Australia, and analyses of dimensions of bio-knowledge at the limits of life.

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 postgenomic temporalities are separated and connected, circling each other to produce a postcolonial articulation of postgenomics as a model of collective embodiment and distributed responsibility. [ABSTRACT FROM AUTHOR]

Biological samples collected from indigenous communities from the mid-20th century for scientific study and preserved in freezers of the Global North have been at the center of a number of controversies. This essay explores why the problem of indigenous biospecimens has returned to critical attention frequently over the past two decades, and why and how Science and Technology Studies should attend to this problem. We propose that mutation – the variously advantageous, deleterious, or neutral mechanism of biological change – can provide a conceptual and analogical resource for reckoning with unexpected problems created by the persistence of frozen indigenous biospecimens. Mutations transcend dichotomies of premodern/modern, pro-science/anti-science, and north/south, inviting us to focus on entanglements and interdependencies. Freezing biospecimens induces mutations in indigenous populations, in the scientists who collected and stored such specimens, and in the specimens themselves. The jumbling of timescales introduced by practices of freezing generates new ethical problems: problems that become ever more acute as the supposed immortality of frozen samples meets the mortality of the scientists who maintain them. More broadly, we propose that an ‘abductive’ approach to Science and Technology Studies theories of co-production can direct attention to the work of temporality in the ongoing alignment of social and technical orders. Attending to the unfolding and mutating vital legacies of indigenous body parts, collected in one time and place and reused in others, reveals the enduring colonial dimensions of scientific practice in our global age and demonstrates new openings for ethical action. Finally, we outline the articles in this special issue and their respective ‘mutations’ to postcolonial Science and Technology Studies, a field that, like genome science, is racked with ethical and temporal dilemmas of reckoning for the past in the present. [ABSTRACT FROM PUBLISHER]

Thousands of blood samples taken from Australia’s indigenous people lie in institutional freezers of the global North, the legacy of a half-century of scientific research. Since those collections were assembled, standards of ethical research practice have changed dramatically, leaving some samples in a state of dormancy. While some European and American collections are still actively used for genetic research, this practice is viewed as unethical by most Australian genetic researchers, who have closer relationships with indigenous Australians and postcolonial politics. For collections to be used ethically, they require a ‘guardian’ who has an ongoing and documented relationship with the donors, so that consent to further studies on samples can be negotiated. This affective and bureaucratic network generates ‘ethical biovalue’ such that a research project can satisfy Australian ethical review. I propose in this article that without ethical biovalue, collections become ‘orphan’ DNA, divorced from a guardian and often difficult to trace to their sources. Such samples are both orphaned and functionally sterile, unable to produce data, scientific articles, knowledge or prestige. This article draws on an ethnographic study of genetic researchers who are working in indigenous communities across Australia. I present tales of researchers’ efforts to generate ethical biovalue and their fears for succession; fears that extend to threats to destroy samples rather than see them orphaned, or worse, fall into the wrong hands. Within these material and affective networks, indigenous DNA morphs from biological sample to sacred object to political time bomb. [ABSTRACT FROM PUBLISHER]

This article introduces the concept of reflexive antiracism as a response to two major critiques of antiracism theory and praxis: the dangers of essentialism and the elicitation of counter-productive emotional reactions. The article explores these critiques as they apply to two broad approaches to diversity training: cultural awareness and antiracism. Reflexive antiracism offers an alternative to existing approaches through a focus on racialisation and the formation and maintenance of racialised identities in particular. An emphasis on the paradoxes of racialisation and the contingencies of minority and white antiracist identities can promote a realistic and productive understanding of diversity training that may avoid the pitfalls of existing approaches. To conclude, an outline of factors that contribute to reflexive antiracism praxis are presented, drawing on examples from an existing diversity training course. [ABSTRACT FROM PUBLISHER]

While human genetic research promises to deliver a range of health benefits to the population, genetic research that takes place in Indigenous communities has proven controversial. Indigenous peoples have raised concerns, including a lack of benefit to their communities, a diversion of attention and resources from non-genetic causes of health disparities and racism in health care, a reinforcement of 'victim-blaming' approaches to health inequalities, and possible misuse of blood and tissue samples. Drawing on the international literature, this article reviews the ethical issues relevant to genetic research in Indigenous populations and considers how some of these have been negotiated in a genomic research project currently under way in a remote Aboriginal community. We consider how the different levels of Indigenous research governance operating in Australia impacted on the research project and discuss whether specific guidelines for the conduct of genetic research in Aboriginal and Torres Strait Islander communities are warranted. [ABSTRACT FROM AUTHOR]

Social scientists and Indigenous people have voiced concerns that media messages about genetics and race may increase the public's belief in genetic determinism and even increase levels of racism. The degree of genetic determinism in media messages has been examined as a determining factor. This study is the first to consider the implications of this area of scholarship for the indigenous minority in Australia. A search of the last two decades of major Australian newspapers was undertaken for articles that discussed Indigenous Australians and genetics. The review found 212 articles, of which 58 concerned traits or conditions that were presented in a genetically deterministic or antideterministic fashion. These 58 articles were analysed by topic, slant, and time period. Overall, 23 articles were anti-deterministic, 18 were deterministic, 14 presented both sides and three were ambiguous. There was a spike in anti-deterministic articles in the years after the Human Genome Diversity Project, and a parallel increase in deterministic articles since the completion of the Human Genome Project in 2000. Potential implications of the nature of media coverage of genetics for Indigenous Australians is discussed. Further research is required to test directly the impact of these messages on Australians. [ABSTRACT FROM AUTHOR]

The poor health of Indigenous Australians is well established. However, the health of residents of one remote community in the Northern Territory of Australia called Utopia has been found recently to be much better than expected. In this article, we draw on historical anthropological research to explain this finding. We trace how cultural and social structures were maintained through changing eras of government policy from the 1930s, and show how these structures strengthened psychosocial determinants of health. We argue that the mainstream psychosocial determinants of social cohesion and self-efficacy are usefully reconceptualized in an Indigenous context as connectedness to culture and land, and collective efficacy, respectively. Continuity of cultural and social structures into the 1940s was facilitated by a combination of factors including the relatively late colonial occupation, the intercultural practices typical of the pastoral industry, the absence of a mission or government settlement, and the individual personalities and histories of those connected to Utopia. [ABSTRACT FROM PUBLISHER]

White anti-racists are an influential social group within settler-colonial societies that often escape critical attention. This article explores one aspect of white anti-racist subjectivities as experienced by those who work in Indigenous health in northern Australia. Although not usually discussed openly between colleagues, frustration, betrayal, and suffering physical discomfort without complaint are common experiences for whites working in remote Indigenous communities. To explain this suffering, I first develop the novel concept of white stigma. I argue that in progressive spaces where there is a concerted attempt to invert colonial power relations—what I call ‘progressive spaces’—whiteness and the privilege it represents is something to be avoided, diminished, and counteracted. When white anti-racists are interpellated as white, this is generally experienced as a stigma. Recognizing whiteness as a stigmatized identity that white anti-racists continuously attempt to rehabilitate and make liveable makes the suffering of white anti-racists intelligible. Drawing on ethnographic research with white anti-racists, I show how suffering works to manage white stigma. This exploration of stigma, suffering and love furthers our understanding of white anti-racists’ identities, and through this, liberal governance in settler societies. [ABSTRACT FROM AUTHOR]

Purpose Culturally inappropriate health services contribute to persistent health inequalities. This article reviews approaches to indigenous cultural training for health workers and assesses how effectively they have been translated into training programmes within Australia. Data sources CINAHL PLUS, MEDLINE, Wiley InterScience, ATSIHealth and ProQuest. Study selection The review focuses on the conceptual and empirical literature on indigenous cultural training for health workers within selected settler-colonial countries, together with published evaluations of such training programmes in Australia. Data extraction Information on conceptual models underpinning training was extracted descriptively. Details of authors, year, area of investigation, participant group, evaluation method and relevant findings were extracted from published evaluations. Results of data synthesis Six models relevant to cultural training were located and organized into a conceptual schema (‘cultural competence, transcultural care, cultural safety, cultural awareness, cultural security and cultural respect’). Indigenous cultural training in Australia is most commonly based on a ‘cultural awareness’ model. Nine published evaluations of Australian indigenous cultural training programmes for health workers were located. Of the three studies that assessed change at multiple points in time, two found positive changes. However, the only study to include a control group found no effect. Conclusion This review shows that the evidence for the effectiveness of indigenous cultural training programmes in Australia is poor. Critiques of cultural training from indigenous and non-indigenous scholars suggest that a ‘cultural safety’ model may offer the most potential to improve the effectiveness of health services for indigenous Australians. [ABSTRACT FROM AUTHOR]

Beginning in the 1970s, the efforts of the Australian settler state to help its Indigenous minority shifted away from 'assimilation' and embraced the principles of 'self-determination'. According to the rhetoric of the self-determination era - explored in this article as the 'liberal fantasy space' - Aboriginal and Torres Strait Islander Australians should be in control of efforts to improve their lives, ultimately making state intervention redundant. A by-product of this shift was to radically change the role of non-Indigenous people who sought to participate in Indigenous development. No longer in charge of Indigenous advancement, they were now cast as partners and supporters. This article explores some of the complexities of White anti-racist subjectivities in the self-determination era. It draws on ethnographic research with a group of progressive Whites who work in Indigenous health in northern Australia. A striking feature of contemporary White anti-racist discourse is a reluctance to claim any agency in the process of Indigenous improvement. I argue that applying the concept of stigma to White privilege is a novel and productive approach to understanding this desire for self-effacement. White stigma works in a parallel fashion to the case of liberal Germans who believe the German collective identity is irrevocably tainted by the Holocaust. In the Australian case, the negative characteristics associated with Whiteness act as a barrier to the broader goal of constructing ethical White subjectivities fit for the 'liberal fantasy space' of post-colonial justice. In their attempts to overcome this barrier and transcend White stigma, White anti-racists mobilise the identity tropes of missionary, mother, and child. Ultimately, these efforts at self-fashioning point to the ultimate fantasy of decolonisation: the desire of White anti-racists to disappear. [ABSTRACT FROM AUTHOR]

Indigenous cultural training for health workers is an increasingly popular intervention designed to improve the health services provided to Indigenous peoples in Australia. The provision of this training is based on the recognition that the measured discrepancy between Indigenous and non-Indigenous health outcomes is in part influenced by cultural difference and a history of racism in Australian society. Indigenous cultural training in Australia predominantly draws on a 'cultural awareness' framework which seeks to educate health workers about 'Indigenous culture'. To date, evaluations of Indigenous cultural training programs have found them to have questionable efficacy, although most of these evaluations have been methodologically inadequate. This article draws on postcolonial theory to explore the limitations of Indigenous cultural training as it is commonly conceptualised. Issues of essentialising 'Indigenous culture', 'otherness' and the absence of systemic responsibility for culturally appropriate health service provision are discussed. Finally, we consider future directions for Indigenous cultural training that are useful to both Indigenous service users and the health workers charged with 'closing the gap' between Indigenous and non-Indigenous health outcomes. [ABSTRACT FROM AUTHOR]

The provision of Indigenous cultural training for non-Indigenous health workers has been widely promoted as a method of improving health service provision to 'close the gap' in Indigenous health. However, in the absence of strong evidence, the power of Indigenous cultural training to meaningfully contribute to the health of Aboriginal and Torres Strait Islander peoples remains questionable. This research explored how six hospital-based nurses consider the role of Indigenous cultural training and the impact it has had on their practice through individual semi-structured interviews. Thematic analysis revealed the significance of individual professionals' attitudes in determining the impact of Indigenous cultural training, as well as the need for institutional support to assist in translating Indigenous cultural training into practice. Utilising post-colonial theory, two key findings emerge. First, the way in which Indigenous cultural training conceptualises 'identity' and 'culture' is critical to its ultimate outcomes. Second, deficits in institutional support limit the efficacy of Indigenous cultural training by placing the onus for institutional change on the shoulders of individual health workers. [ABSTRACT FROM AUTHOR]

This essay discusses J. Kehaulani Kauanui's Hawaiian Blood: Colonialism and the Politics of Sovereignty and Indigeneity. The book is a history of the legal definition of a 'native Hawaiian', which, for government purposes, is set at one-half blood quantum, more commonly expressed as '50 per cent'. This definition originated from the US Government's Hawaiian Homes Commission Act of 1921, which set aside land to be distributed to native Hawaiians. The book argues against the 'blood quantum model' of Indigeneity in favour of a 'Hawaiian genealogical model'. Kauanui argues that the latter model, where anyone with a known Hawaiian ancestor is considered to be Kanaka Maoli (the contemporary term for 'native Hawaiian'), should be supported because it corresponds with traditional Hawaiian practices. The present review essay critiques methodological and political aspects of the book that act to naturalise and dehistoricise Kanaka Maoli as a political formation. In the process, a distinct boundary is drawn between the categories of blood/biology/Western/exclusive and geneaology/tradition/Hawaiian/inclusive. This binary is the result of what Latour calls a process of 'purification' and is an obstacle to understanding the messy reality of Hawaiian life. The challenge of transcending purification is one that must be faced by Critical Indigenous Studies, an emerging area of scholarship of which Kauanui's book is an important work. [ABSTRACT FROM AUTHOR]

Since the 1970s, “self-determination” has been the dominant trope for expressing national aspirations for Indigenous Australians. Through the principles of self-determination, the liberal multicultural state has attempted to deliver postcolonial justice to its first peoples. In this new century, the sheen of the self-determination era has faded. Once heralded as the antidote to the racist assimilation era, it is now depicted as the cause of social ills. In this article, I draw on an ethnographic study of White antiracists working in Indigenous health in northern Australia to analyze the brand of liberal rationality that dominated the discourse of the self-determination era. By engaging with a “tribe” of White people who identify with the aims of the self-determination era, we can decipher the logic of self-determination as an instrument of the liberal state and better understand the internal contradictions and ambiguities that have led to its recent demise. [ABSTRACT FROM AUTHOR]

Aboriginal and Torres Strait Islander Australians experience widespread socioeconomic disadvantage and health inequality. In an attempt to make Indigenous health research more culturally-appropriate, Aboriginal and Torres Strait Islander Australians have called for more attention to the concept of emotional and social wellbeing (ESWB). Although it has been widely recognised that ESWB is of crucial importance to the health of Aboriginal and Torres Strait Islander peoples, there is little consensus on how to measure in Indigenous populations, hampering efforts to better understand and improve the psychosocial determinants of health. This paper explores the policy and political context to this situation, and suggests ways to move forward. The second part of the paper explores how scales can be evaluated in a health research setting, including assessments of endorsement, discrimination, internal and external reliability. We then evaluate the use of a measure of stressful life events, the Negative Life Events Scale (NLES), in two samples of Aboriginal people living in remote communities in the Northern Territory of Australia. We argue that the Negative Life Events Scale is a promising assessment of psychosocial wellbeing in Aboriginal and Torres Strait Islander populations. Evaluation of the scale and its performance in other samples of Aboriginal and Torres Strait Islander populations is imperative if we hope to develop better, rather than more, scales for measuring ESWB among Indigenous Australians. Only then will it be possible to establish standardized methods of measuring ESWB and develop a body of comparable literature that can guide both a better understanding of ESWB, and evaluation of interventions designed to improve the psychosocial health of Indigenous populations and decrease health inequalities. [ABSTRACT FROM AUTHOR]

Public health practitioners in Australian indigenous health work in a complex political environment. Public health training is limited in providing them with conceptual tools needed to unpack the postcolonial nexus of `fourth-world' health. A workshop was designed by the authors to facilitate critical reflection on how the concepts of race and culture are used in constructions of indigenous ill-health. It was attended by researchers, students, clinicians and bureaucrats working in public health in northern Australia. A thematic analysis of the workshop minutes provided insight into public health practitioners' narratives of Indigenous ill-health. The major themes that emerged included tension between structure and agency and between sameness and difference, and ambivalence surrounding the `helper' identity of public health practitioners. We suggest that these narratives can be understood as attempts to maintain the moral integrity of both Indigenous people and practitioners. This task is necessitated by the specter of cultural relativism intrinsic to contemporary liberal discourses of multiculturalism that attempt to reconcile the universal rights of the citizen with the special rights of minority groups. We argue that the concepts of self-determination and neocolonialism mark the spaces where universal and particular discourses overlap and clash. Practitioners who seek to escape neocolonialism must inhabit only the discursive space of public health congruent with self-determination, leaving them in a bind common to many postcolonial situations. They must relieve the ill-health of indigenous people without acting upon them; change them without declaring that change is required. [ABSTRACT FROM AUTHOR]

In this article, the author reflects upon research ethics guidelines in Australia that have been framed as protecting Indigenous Australians from research. It mentions about the 1986 conference of the National Health and Medical Research Council (NHMRC) of Australia in which decision was taken to frame ethical guidelines for protecting Indigenous people from health research. The author terms the ethical discourse of sidelining Indigenous people in research as racialisation.

Environmental epigenetics is increasingly employed to understand the health outcomes of communities who have experienced historical trauma and structural violence. Epigenetics provides a way to think about traumatic events and sustained deprivation as biological "exposures" that contribute to ill-health across generations. In Australia, some Indigenous researchers and clinicians are embracing epigenetic science as a framework for theorising the slow violence of colonialism as it plays out in intergenerational legacies of trauma and illness. However, there is dispute, contention, and caution as well as enthusiasm among these research communities. In this article, we trace strategies of "refusal" (Simpson, 2014) in response to epigenetics in Indigenous contexts. Drawing on ethnographic fieldwork conducted in Australia with researchers and clinicians in Indigenous health, we explore how some construct epigenetics as useless knowledge and a distraction from implementing anti-colonial change, rather than a tool with which to enact change. Secondly, we explore how epigenetics narrows definitions of colonial harm through the optic of molecular trauma, reproducing conditions in which Indigenous people are made intelligible through a lens of "damaged" bodies. Faced with these two concerns, many turn away from epigenetics altogether, refusing its novelty and supposed benefit for Indigenous health equity and resisting the pull of postgenomics. [ABSTRACT FROM AUTHOR]

The release of RNA-containing extracellular vesicles (EV) into the extracellular milieu has been demonstrated in a multitude of differentin vitrocell systems and in a variety of body fluids. RNA-containing EV are in the limelight for their capacity to communicate genetically encoded messages to other cells, their suitability as candidate biomarkers for diseases, and their use as therapeutic agents. Although EV-RNA has attracted enormous interest from basic researchers, clinicians, and industry, we currently have limited knowledge on which mechanisms drive and regulate RNA incorporation into EV and on how RNA-encoded messages affect signalling processes in EV-targeted cells. Moreover, EV-RNA research faces various technical challenges, such as standardisation of EV isolation methods, optimisation of methodologies to isolate and characterise minute quantities of RNA found in EV, and development of approaches to demonstrate functional transfer of EV-RNAin vivo. These topics were discussed at the 2015 EV-RNA workshop of the International Society for Extracellular Vesicles. This position paper was written by the participants of the workshop not only to give an overview of the current state of knowledge in the field, but also to clarify that our incomplete knowledge – of the nature of EV(-RNA)s and of how to effectively and reliably study them – currently prohibits the implementation of gold standards in EV-RNA research. In addition, this paper creates awareness of possibilities and limitations of currently used strategies to investigate EV-RNA and calls for caution in interpretation of the obtained data. [ABSTRACT FROM PUBLISHER]

The article offers author's insights on the debate on postcolonial studies between authors Neelam Srivastava and Baidik Bhattacharya, and Gramsci scholars Marcus Green and Stefano Selenu regarding Timothy Brennan's review essay of Srivastava's and Bhattacharya's book "The Postcolonial Gramsci." She says that Brennan argues on the book's anti-Marxist ideology common with postcolonial scholarship. She mentions that Bhattacharya and Srivastava defended the book's integrity of Gramsci scholarship.

The study examines how white teachers talked to children about national identity and cultural diversity by drawing on qualitative research with eight- to 12-year-old students and their teachers from four Australian primary schools with different racial, ethnic and cultural demographics. Despite a range of explicit and implicit approaches that fostered different levels of critique among students, teachers often communicated Australian national identity as commensurate to white racial and Anglo-Australian cultural identity. We identified three main approaches teachers used to talk about national identity and cultural diversity: cultural essentialism, race elision and a quasi-critical approach. We conclude that the wider education system needs to develop a more formal curriculum structure that guides teachers in developing a better awareness of the power of white normativity, and to critically and explicitly counter discourse and practice that centres whiteness as foundational to dominant conceptualisations of national identity. [ABSTRACT FROM PUBLISHER]

A correction to the article "Genetic Research and Aboriginal and Torres Strait Islander Australians" that was published in the December 2012 issue is presented.

Abstract: This study examines egalitarianism as an ethnic-racial socialization message used by teachers with 8–12 year old children in four socio-demographically diverse elementary schools in Melbourne, Australia. The three main types of egalitarian messages identified are i) procedural-justice color-blindness, ii) distributive-justice color-blindness and iii) colormuteness, and each is explored in relation to how teachers talk to children about racial, ethnic and cultural diversity, and racism. We conclude that teacher confidence and capability, and to a lesser degree, school context, influenced the types of egalitarian messages used about diversity and the extent to which teachers had explicit and critical discussions about racism. [Copyright &y& Elsevier]

Background: Aboriginal and Torres Strait Islander people do not enjoy equal access to specialist health services that adequately meet their needs. Clinical genetics services are at the vanguard of realising the health benefits of genomic medicine. As the field continues to expand in clinical utility and implementation, it is critical that Aboriginal and Torres Strait Islander people are able to participate and benefit equally to avoid further widening of the existing health gap. This is the first study to explore barriers to accessing clinical genetics services among Aboriginal and Torres Strait Islander people, which has been acknowledged as a key strategic priority in Australian genomic health policy. Methods: A participatory design process engaged a majority-Aboriginal Project Reference Group and Aboriginal End-User Group. 63 semi-structured interviews were conducted with Aboriginal and/or Torres Strait Islander people who had accessed the government-funded clinical genetics service in Western Australia, Queensland or the Northern Territory between 2014 and 2018. The sample included patients, parents and carers. Participants were asked to recount their 'patient journey', from referral through to post-appointment and reflect on their perceptions of genetics and its implications for the health of themselves and their families. Analysis tracked chronological service engagement, followed by an inductive thematic approach. Results: Barriers to access and engagement were present at each stage of the patient journey. These included challenges in obtaining a referral, long waiting periods, limited genetic literacy, absence of Aboriginal support services, communication challenges and lack of adequate psychosocial support and follow-up after attendance. Participants' overall experiences of attending a genetic health service were varied, with positive perceptions tied closely to a diagnosis being achieved. The experience of (and expectation for) recognition of cultural identity and provision of culturally safe care was low among participants. Unaddressed concerns continued to cause significant distress in some people years after their appointment took place. Conclusions: There is significant scope for improving the care provided to Aboriginal and Torres Strait Islander people at clinical genetics services. Immediate attention to minimising logistical barriers, developing relationships with Aboriginal Community Controlled Health Services and providing practical and specific cultural safety training for practitioners is required at the service-level. Our findings strongly support the development of guidelines or policies recognising the collective cultural needs of Aboriginal and Torres Strait Islander people in relation to genomic health care. [ABSTRACT FROM AUTHOR]

Objective: This study examined the practices and attitudes of Australian biobanks regarding access to samples and data, as well as local and global networking with other biobanks. Methods: This was a mixed-methods study, including an online survey of Australian biobank administrators and qualitative interviews with survey participants. The survey examined the criteria applied when considering requests to share or network. The interviews explored attitudes and practices regarding sharing and networking. Results: Most (90.9%; 30/33) biobanks offered access to their samples and data to others, principally for research (90.6%; 29/32). The most common criteria used to evaluate access requests included ethical oversight (84.8%; 28/33), scientific merit (84.8%; 28/33) and intended use (81.8%; 27/33). Just over two-thirds (69.7%; 23/33) of biobanks participated in Australian networks, and 39.1% (9/23) participated in global networks. Networking took the form of both sharing standardised operating procedures and policies (60.9%) and sharing samples and data (43.5%). Thirteen of the 16 interviewees participated in networks. Motivations for sharing included scientific necessity, sharing expertise and standardising operations and governance. Significant barriers to networking remain, including insufficient resources, inconsistent regulations and procedures, and cultural and political issues to do with the conduct of research. Conclusions: Many Australian biobanks are already active participants in various types of global biobanking. If biobanks are to expand and make the most of their involvement in global networks, then important barriers need to be overcome. What is known about the topic?: Biobanks that store human tissue and associated data are increasingly forming local, national and global networks. These networks create opportunities for enhancing the utility and sustainability of biobanks, but also raise considerable technical, legal and ethical challenges. What does this paper add?: This paper reports findings from a mixed-methods study of Australian biobanks and reveals contemporary practices and perspectives concerning sample and data sharing, as well as local and global networking. It found most Australian biobanks currently take part in these activities. What are the implications for practitioners?: Many Australian biobanks are networking in various ways across regional and national borders. A better understanding of current practices and views on significant and emerging issues is relevant to the diverse range of biobank stakeholders involved in any agenda to expand biobank networking, including patients, consumers, clinicians, scientists, policy makers and regulators. [ABSTRACT FROM AUTHOR]

Background: Aboriginal and Torres Strait Islander people experience a greater burden of disease and die younger than non-Indigenous Australians, with Aboriginal people living in remote areas of the Northern Territory of Australia having the lowest life expectancy estimates. Despite a high burden of chronic disease among Aboriginal and Torres Strait Islander people, access to specialist health services remains low and models of care that increase engagement, may improve health outcomes. Methods: We describe client and staff perspectives of a model of clinical genetics services provided by the MJD Foundation (MJDF) in geographically and culturally complex contexts within the Northern Territory of Australia. We seek to understand the MJDF model's success in supporting Aboriginal families with the familial, neurodegenerative condition Machado-Joseph disease and how it could be applied in the provision of other specialist services. Thematic analysis was undertaken on semi-structured interviews with primary health care staff (n = 2), Non-Aboriginal MJDF Staff (n = 7) and Aboriginal MJDF Clients / Community workers (n = 13). Results: Four key themes regarding the MJDF model of service delivery were identified with the service being; 1) client led 2) accepting of various understandings of genetic disease causation 3) focused on relationships, continuity and trust between the service provider and the clients, and 4) committed to incorporating an inclusive whole-of-family practice. The MJDF model takes a community-based, person-and family-centred approach to successfully deliver effective specialist genetic health services in remote community settings. We propose that these approaches have broad application in the future design and delivery of specialist health services particularly in culturally complex settings. [ABSTRACT FROM AUTHOR]

In the second half of the twentieth century, Indigenous populations from different parts of the world were identified as key subjects in a wide range of investigations into patterns of human biological variation. Focusing on Amazonia, a prominent region for such research, this paper explores some of the complex relationships between biomedicine, anthropological knowledge, political regimes, and Indigenous rights. We focus on the roles of Francis L. Black (Yale University) and James V. Neel (University of Michigan), leading American scientists working in lowland South America from the 1970s to the 1990s, in knowledge production and scientific disputes at the intersection of human biology and susceptibility to infectious diseases, as well as the use of specific biomedical technologies (e.g., vaccines). During the Cold War, arguments concerning genetically determined susceptibility to infectious diseases and the role of biomedicine in health care for Indigenous populations became highly disputed, as scientists were concerned about how scientific knowledge could be used in the implementation of public policies. We argue that analysis of unpublished debates about the political implications of the trajectory of biomedical research about Amazonian Indigenous peoples helps to broaden and complexify the global history of human biological diversity research in the post–World War II period. [ABSTRACT FROM AUTHOR]

Ethnic-racial socialisation is broadly described as processes by which 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. [ABSTRACT FROM PUBLISHER]

We demonstrate that by altering the length of Cas9-associated guide RNA (gRNA) we were able to control Cas9 nuclease activity and simultaneously perform genome editing and transcriptional regulation with a single Cas9 protein. We exploited these principles to engineer mammalian synthetic circuits with combined transcriptional regulation and kill functions governed by a single multifunctional Cas9 protein. [ABSTRACT FROM AUTHOR]