Genome Canada has committed significant resources to ensure that racialised groups are included in its initiatives; however, specific equity considerations related to engaging these communities in human genomic research continue to require deeper attention and exploration. This scoping review aims to widen the frame of analysis concerning inclusive human genomics by undertaking a synthesis that includes perspectives from genomicists, decision and policymakers, legal experts in bioethics and leaders from racialised communities.
We conducted a comprehensive scoping review using the Arksey and O’Malley framework to examine the equitable participation of racialised communities in human genomic research.
Our goal was to identify the barriers preventing these populations from equally participating in human genomic research. The review focused on studies from five countries: Canada, the USA, the UK, Australia and New Zealand which have similar immigration patterns and have received racialised populations from from some of the same communities around the globe. These features makes studying these particular countries germane to studying the common challenges they face in human genomics research.
Our scoping review examined both academic and grey literature, including MEDLINE, EMBASE, PsycINFO (inception to 11 June 2025), CINAHL (to 12 June 2025) and Cochrane Central Register of Controlled Trials (CENTRAL) (to 19 June 2025), as well as Google Scholar and OAISter (October, 2023).
Data were analysed using Braun and Clarke’s thematic synthesis guidelines. These included familiarisation with the relevant texts in the selected articles, generating initial codes using an inductive approach, reviewing potential themes and finalising the themes based on the consensus of the research team.
The study identified key barriers and facilitators to participation in human genomic research among racialised communities. The first theme (exclusion) highlighted obstacles such as a lack of transportation, limited knowledge of genetics and distrust stemming from concerns of stigmatisation and health disparities. The second theme (diversity of positions) described varied perceptions influenced by cultural values and motivations, with preferences for transparency and autonomy in research participation. Finally, the third theme (equity in genetic research) outlined the limited use of community-based participatory models and biobanking, underscoring the need for more inclusive and equitable research practices to fully engage racialised communities.
Future research should prioritise strategies of authentic engagement with racialised communities to enhance both inclusivity and equity in genetic, human genomic, precision medicine and precision health research.
Parents of children with neurodevelopmental disorders often experience high levels of stress that impact their mental health, yet few interventions focus on their well-being. To address this gap, we developed a mental health intervention based on emotional intelligence (EI), designed for delivery in healthcare settings. We hypothesise that enhancing EI can reduce parenting stress and improve psychological well-being. This study aims to assess the effectiveness, cost-effectiveness and feasibility of this EI-based intervention in Bangladesh.
This hybrid type 1 effectiveness-implementation study will include a cluster randomised controlled trial, an implementation analysis and an economic evaluation. Eight child development centres will be randomly assigned in a 1:1 ratio to intervention and waitlist control groups. A total of 480 parents (mothers and fathers) will be recruited. The intervention consists of interactive sessions on EI skills, supported by personal diaries and a mobile app. Data will be collected at baseline and 12 weeks postintervention using validated tools to assess EI, parenting stress, psychological well-being and other mental health outcomes. Implementation will be evaluated using mixed methods to assess feasibility, acceptability and fidelity. Cost-effectiveness will be determined through a cost–utility analysis of direct and indirect costs.
Ethical approval was granted by the Institutional Review Board of Bangladesh Medical University (BSMMU/2022/10733). Written informed consent will be obtained at each stage of data collection and intervention. Findings will be disseminated through open-access publications, plain-language summaries, academic conferences, community workshops and policy briefs. Data will be shared in open-access platforms to inform mental health strategies in low-resource settings globally.
Self-harm and suicide are common among prison inmates, but less is known about these phenomena in those with psychosis.
The aim of this study was to examine self-harm behaviour in New South Wales (NSW) prisons in Australia among inmates diagnosed with psychosis. This study also examined self-harm-related alerts applied by Corrective Services to assist staff with the management of the security and well-being of inmates.
A retrospective case-control data-linkage study was conducted using administrative data collections in NSW, Australia.
The study included all individuals diagnosed with psychosis and incarcerated between 2001 and 2020 in NSW as cases and an age and sex matched control group with no such diagnosis with a record of incarceration in the same time period.
The primary outcome measure was self-harm among the cases and controls. The secondary outcome measure was the application of alerts by Corrective Services in relation to self-harm incidents.
Multivariate regression analysis was used to examine predictors of self-harm in prison. Prisoners with psychosis (n=14 900) were more likely to self-harm than controls (n=2713), with 15.0% versus 3.6% engaging in self-harm (highest odds of self-harm observed in those with schizophrenia and related psychoses, aOR=4.84, 95% CI: 3.93 to 5.98). Those of Aboriginal heritage had an increased risk of self-harm (aOR=1.58, 95% CI: 1.43 to 1.75). Factors associated with a lower risk of self-harm were male sex and older age (≥25 years) at the time of their first incarceration. 35.6% of those released from prison with a prior psychosis diagnosis had at least one alert applied during incarceration compared with 10.1% of prisoners without a diagnosis of psychosis. Overall, 35 individuals with psychosis and 1 individual from the control group died while in prison between 2001 and 2020. 17 prison suicides were recorded from the study population; all occurred in the psychosis group.
Given the heightened risk of self-harm in those with histories of psychosis, consideration should be given to sharing mental health information between agencies to improve the care and management of this group during incarceration. Prison alerts may be a useful tool to help staff manage inmates’ well-being if used appropriately.
Nipah virus (NiV) is a bat-transmitted paramyxovirus causing recurrent, high-mortality outbreaks in South and South-East Asia. As a WHO priority pathogen, efforts are underway to develop therapies like monoclonal antibodies and small-molecule antivirals, which require evaluation in clinical trials. However, trial design is challenging due to limited understanding of NiV’s clinical characteristics. Given the rarity of NiV infections, strategies targeting improved outcomes for the broader acute encephalitis syndrome (AES) patient population, including those with NiV, are essential for advancing therapeutic research. To address these gaps, we designed the Bangladesh AES cohort study to characterise the patient population, clinical features, treatment practices, common aetiologies and outcomes in patients presenting with AES, including NiV infection, as a clinical characterisation study to inform the design of clinical trials for NiV and AES more broadly.
This prospective cohort study will be conducted in Bangladesh, a NiV endemic country with annual outbreaks. In collaboration with the ongoing NiV surveillance programme in Bangladesh, we aim to enrol up to 2000 patients of all ages presenting with AES at three tertiary care hospitals within the Nipah belt. Patients who provide informed consent to participate will be monitored throughout their hospital stay until 90 days post enrolment. Data will be systematically collected through interviews and medical record reviews at several time points: on the day of enrolment, day 3, day 7, the day of critical care admission (if applicable), discharge day and 90 days post enrollment. Additionally, a portion of the cerebrospinal fluid collected under the concurrent NiV surveillance protocol will be tested for an array of viral and bacterial pathogens responsible for encephalitis at the International Centre for Diarrhoeal Disease Research Bangladesh (icddr,b) laboratory.
The study received ethical approval from the Oxford Tropical Research Ethics Committee, University of Oxford, UK (OxTREC Ref: 576–23) and the institutional review board of icddr,b, Bangladesh (icddr,b protocol number: 24016). By characterising the AES patient population, this study will generate essential evidence on key clinical parameters, which will be pivotal in optimising the design of clinical trials for potential interventions aimed at improving outcomes in patients with AES, including those with NiV disease. Findings will be shared with participating hospitals, patients and relevant government stakeholders. Results will also be disseminated through conference presentations and peer-reviewed publications.
Not applicable (this is an observational study).
Commentary on: Lo Faro V, Johansson T, Johansson Å. The risk of venous thromboembolism in oral contraceptive users: the role of genetic factors—a prospective cohort study of 2 40 000 women in the UK Biobank. Am J Obstet Gynecol. 2024;230:360.e1-13
Implications for practice and research Currently, venous thromboembolism (VTE) risk assessment for contraceptive counselling is based on clinical characteristics and family history. Incorporating genetic risk assessment into current practice can significantly enhance the screening of oral contraceptive users at high risk for VTE. Further research is needed to develop a comprehensive model, explore the cost-effectiveness and implementation of genetic risk assessment in contraceptive counselling, address challenges in communicating genetic information and evaluate its applicability across diverse populations.
Venous thromboembolism (VTE) is a complex disorder influenced by both acquired and inherited factors. Oral contraceptive use, an acquired factor, has been linked to an increased risk of...