Dynamic Consent is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health (...) information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people.In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation. (shrink)

McGovern, Kevin This article explores statements from the National Health and Medical Research Council (NHMRC) about health research involving Aboriginal and Torres Strait Islander peoples.

The second edition of Aboriginal and Torres Strait Islander Education: An Introduction for the Teaching Profession prepares students for the unique environment they will face when teaching Aboriginal and Torres Strait Islander students at early childhood, primary and secondary levels. This book enables future teachers to understand Aboriginal and Torres Strait Islander education within a social, cultural and historical context and uses compelling stories and practical strategies to empower both student and teacher. Updated with (...) the Australian Curriculum in mind, this is a unique textbook written by highly regarded Aboriginal and Torres Strait Islander academics. Each chapter opens with a powerful anecdote from the author, connecting the classroom to real-world issues. This updated edition has also been expanded to include information on fostering the unique talents of Aboriginal and Torres Strait Islander children and young people and allows the reader to reflect on classroom practices throughout. (shrink)

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. (shrink)

Genomics is increasingly becoming an integral component of health research and clinical care. The perceived difficulties associated with genetic research involving Aboriginal and Torres Strait Islander people mean that they have largely been excluded as research participants. This limits the applicability of research findings for Aboriginal and Torres Strait Islander patients. Emergent use of genomic technologies and personalised medicine therefore risk contributing to an increase in existing health disparities unless urgent action is taken. To allow the (...) potential benefits of genomics to be more equitably distributed, and minimise potential harms, we recommend five actions: ensure diversity of participants by implementing appropriate protocols at the study design stage; target diseases that disproportionately affect disadvantaged groups; prioritise capacity building to promote Indigenous leadership across research professions; develop resources for consenting patients or participants from different cultural and linguistic backgrounds; and integrate awareness of issues relating to Indigenous people into the governance structures, formal reviews, data collection protocols and analytical pipelines of health services and research projects. (shrink)

Erratum to: Bioethical InquiryDOI 10.1007/s11673-012-9391-xLobna Rouhani, University of Melbourne, is a co-author of the article “Genetic Research and Aboriginal and Torres Strait Islander Australians” (2012, 419–432) that was published in the Journal of Bioethical Inquiry’s 9(4) symposium “Cases and Culture.” Her name was omitted from the publication and she should be credited as the third author of this article.

Research Ethics, Volume 18, Issue 1, Page 51-63, January 2022. Aboriginal and Torres Strait Islander peoples in Australia, have historically experienced research as another means of colonialization and oppression. Although there are existing frameworks, guidelines and policies in place that respond to this history, the risk of exploitation and oppression arising from research still raises challenging ethical questions. Since the 1990s the National Health and Medical Research Council in Australia has developed specific sets of guidelines that govern research (...) with these populations in an attempt to redress injustices of the past. The current guidelines: Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders, 2018, emphasis six core values which are bound together by “spirit and integrity.” The values are reflected through respect for cultural inheritance, and genuine negotiation of partnerships between researchers, other stakeholders, and communities. We examine whether these guidelines can lead to research and research practices that redress some of the ongoing traumas of colonialization and racism. We draw upon Margaret Urban Walker’s formulation of restorative justice, based upon her “pragmatics of repair” which relies upon “voice, validation and vindication” and at its core, the restoration of relationships. (shrink)

In this paper, we discuss and critically evaluate the National Health and Medical Research Council’s recently released document entitled ‘Draft Values and Ethics in Aboriginal and Torres Strait Islander Health Research’. We provide a brief account of its development, philosophy and contents, and then consider how the document could be used by HRECs. We recommend that three specially targeted documents be developed from this one document, to meet the particular needs of HRECs, Indigenous people and researchers. We propose (...) a system of Indigenous ethics advisers as a way to implement the central ideas of the new draft guidelines, without falling into the legalism and rule-following that these guidelines explicitly aim to avoid. (shrink)

An increasing number of technology firms are implementing processes to identify and evaluate the ethical risks of their systems and products. A key part of these review processes is to foresee potential impacts of these technologies on different groups of users. In this article, we use the expression Ethical Foresight Analysis to refer to a variety of analytical strategies for anticipating or predicting the ethical issues that new technological artefacts, services, and applications may raise. This article examines several existing EFA (...) methodologies currently in use. It identifies the purposes of ethical foresight, the kinds of methods that current methodologies employ, and the strengths and weaknesses of each of these current approaches. The conclusion is that a new kind of foresight analysis on the ethics of emerging technologies is both feasible and urgently needed. (shrink)

De se attitudes seem to play a special role in action and cognition. This raises a challenge to the traditional way in which mental attitudes have been understood. In this chapter, we review the case for thinking that de se attitudes require special theoretical treatment and discuss various ways in which the traditional theory can be modified to accommodate de se attitudes.

Call ‘a substance’ a person who is at home in a relatively stable and unified sense-making framework: a social structure that to some degree specifies which categories are important for interpreting reality, which goals are worth pursing, which character traits are admirable, etc. Call ‘an accident’ a person who is not at home in one such framework. It is tempting to think that being a substance is preferable, but I present some considerations for thinking otherwise. Mexican philosophers Emilio Uranga and (...) Jorge Portilla, I argue, present notions of accidentality as decolonial tools. Uranga’s account enables Mexicans to have positive valuation of their being independently of the approving gaze of the colonizers and their standards of value. Portilla’s thought distinguishes between pernicious accidentality resulting from the disintegration of sense-making frameworks and authentic accidentality as a condition for freedom, self-creation, and ultimately for individual and communal liberation. (shrink)

One important limitation of the current renditions of interpretivism is that its emphasis on the moral dimension of sport has overlooked the aesthetic dimension lying at the core of this account of sport. The interpretivist’s failure to acknowledge and consider the aesthetic implicitly distances this realm from the moral. Marcia Muelder Eaton calls this distancing the separatist mistake. This paper argues that interpretivism presupposes not only moral but also aesthetic principles and values. What it sets out to demonstrate is that (...) interpretivism is an integralist, or nonseparatist, account of sport, one in which ethical and aesthetic values are not exclusive. Making explicit and specifying interpretivism’s combined moral-aesthetic approach to sport not only helps to better distinguish the whole range of values that make up sport as well as their interconnection but also encourages sportspeople to pursue more coherent sport and, thus, more enriching lives. (shrink)

An increasing number of technology firms are implementing processes to identify and evaluate the ethical risks of their systems and products. A key part of these review processes is to foresee potential impacts of these technologies on different groups of users. In this chapter, we use the expression Ethical Foresight Analysis to refer to a variety of analytical strategies for anticipating or predicting the ethical issues that new technological artefacts, services, and applications may raise. This chapter examines several existing EFA (...) methodologies currently in use. It identifies the purposes of ethical foresight, the kinds of methods that current methodologies employ, and the strengths and weaknesses of each of these current approaches. The conclusion is that a new kind of foresight analysis on the ethics of emerging technologies is both feasible and urgently needed. (shrink)

This paper explores the challenges posed by the rapid advancement of artificial intelligence specifically Large Language Models (LLMs). I show that traditional linguistic theories and corpus studies are being outpaced by LLMs’ computational sophistication and low perplexity levels. In order to address these challenges, I suggest a focus on language as a cognitive tool shaped by embodied-environmental imperatives in the context of Agentive Cognitive Construction Grammar. To that end, I introduce an Embodied Human Language Model (EHLM), inspired by Active Inference (...) research, as a promising alternative that integrates sensory input, embodied representations, and adaptive strategies for contextualized analysis and conceptual utility maximization. By incorporating Active Inference, which sees perception as inferring the world's state from sensory data, the findings reveal that the characterization of the English modal be able to, as a triadic construction encoding biological intelligent agency, introduces a more plausible theoretical basis for the positing of linguistic constructions. This emphasizes the crucial role of embodied human language models in the comprehension of how humans construct preferred futures through language. (shrink)

Leibniz claims that for every possible substance S there is an individual concept that includes predicates describing everything that will ever happen to S, if S existed. Many commentators have thought that this leads Leibniz to think that all properties are had essentially, and thus that it is not metaphysically possible for substances to be otherwise than the way their individual concept has them as being. I argue against this common way of reading Leibniz’s views on the metaphysics of modality. (...) I develop a model in which individual concepts are innocent; that is, individual concepts are divine ideas that permit God to know everything that will ever happen to all possible substances, if created, but these individual concepts neither require that all properties are had essentially nor require that it is metaphysically necessary for substances to be the way their individual concepts have them as being. (shrink)

I argue for a substantive interpretation of Carlos Vaz Ferreira’s account of intellectual flourishing as intellectual liberation. For Vaz Ferreira, I argue, there is an inescapable master-slave dynamic between language and language users, so that flourishing intellectually essentially involves a type of mastery of language that frees up thinking from enslaving linguistic/conceptual confusions and thus facilitates the acquisition of truth. Central to this project are Vaz Ferreira’s most interesting, and radical, views on the nature of language signification and thus on (...) human’s ability to accurately describe and know reality, for failing to keep these linguistic limitations in mind, Vaz Ferreira argues, is a central way for language to enslave humans to confused thinking and thus prevent their intellectual flourishing. (shrink)