ABSTRACT
BACKGROUND: Racism contributes to health inequities faced by people of colour and marginalised groups. Despite widespread recognition of the impacts of racism, mitigating strategies and legislation have been largely unsuccessful. Research into racism in healthcare has mostly examined personal experiences of healthcare workers and patients, assuming that the definitions of racism and race are similarly understood by all. However, ethnicity and race are often conflated, and racism seen as primarily interpersonal and ahistorical. PURPOSE: This paper explores hospital employee understandings of racism, its impacts and how to reduce it. METHODS: Forty-nine staff within one Australian hospital participated in individual qualitative interviews regarding the definition, impact, and ways of reducing racism. Interviews were analysed with a reflexive thematic analytic approach using a Postcolonial framework. RESULTS: Participants described racism as being experienced by marginalised groups of people in Australia. They identified that racism has detrimental effects on health and wellbeing. Not all were clear regarding what constituted racism: it was not described as an ideology created to justify colonial distribution of power and resources. Some thought that racism was individual prejudice while others noted it was also structural in nature. Participants commonly defined race as involving physical or cultural differences, suggesting that discredited historical and colonial concepts of race continue in Australian society. While many felt that education was the best way to reduce racism and its impacts, some participants noted that being educated did not necessarily change racist behaviour. CONCLUSIONS: The lack of accurate understanding of the concept of race and racism likely contributes to the relatively poor effect of current strategies to combat racism. As an initial part of deeper systemic anti-racist reform, this research supports calls for anti-racist education to clarify the definition of racism as an ideology.
Subject(s)
Racism , Humans , Australia , Ethnicity , Delivery of Health Care , HospitalsABSTRACT
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.
Subject(s)
DNA, Ancient , Ethics, Research , Human Genetics , Humans , Family , Population Groups , Research Personnel , Human Genetics/ethics , Guidelines as Topic , Stakeholder Participation , Community-Institutional RelationsABSTRACT
Expanded carrier screening (ECS) for recessive monogenic diseases requires prior knowledge of genomic variation, including DNA variants that cause disease. The composition of pathogenic variants differs greatly among human populations, but historically, research about monogenic diseases has focused mainly on people with European ancestry. By comparison, less is known about pathogenic DNA variants in people from other parts of the world. Consequently, inclusion of currently underrepresented Indigenous and other minority population groups in genomic research is essential to enable equitable outcomes in ECS and other areas of genomic medicine. Here, we discuss this issue in relation to the implementation of ECS in Australia, which is currently being evaluated as part of the national Government's Genomics Health Futures Mission. We argue that significant effort is required to build an evidence base and genomic reference data so that ECS can bring significant clinical benefit for many Aboriginal and/or Torres Strait Islander Australians. These efforts are essential steps to achieving the Australian Government's objectives and its commitment "to leveraging the benefits of genomics in the health system for all Australians." They require culturally safe, community-led research and community involvement embedded within national health and medical genomics programs to ensure that new knowledge is integrated into medicine and health services in ways that address the specific and articulated cultural and health needs of Indigenous people. Until this occurs, people who do not have European ancestry are at risk of being, in relative terms, further disadvantaged.
Subject(s)
Metagenomics/methods , Population Groups/genetics , Australia , Genetic Variation/genetics , HumansABSTRACT
In Spring of 2012, the partially undressed and skeletonized remains of a homeless adult Hispanic male was found in a fairly open wooded area in Nebraska. The remains showed evidence of extensive pathologies, which included healed traumas and surgeries. Examination of the decedent's medical records revealed that he had a history of kidney and liver problems, alcohol abuse, several traumas including a major head injury that necessitated a craniotomy, and radiological features of neurocysticercosis. The autologous bone flap, which was replaced after the craniotomy, had resorbed significantly away from the edges of the injury. Death was variously attributed to craniocerebral injury with hypothermia sequel to blunt force trauma most probably due to a fall. The manner of death was ruled as an accident. This study makes use of the forensic evidence and medical records to examine the possibility that the unique combination of failed cranioplasty, hypothermia, and neurocysticercosis may have contributed to the victim's death. Other potential causes of death are considered.