Disability is one of the key public health issues in India and the burden will increase given the trend of an aging population. People with disabilities experience greater vulnerability as they may develop secondary health issues. They face various barriers while accessing health services. This is a major ethical concern. In this article, we frame the barriers to healthcare provision to persons with disabilities and propose an ethical framework to address these barriers. This ethical framework is derived from the basic (...) ethical principles of justice, fairness, trust, solidarity, stewardship, proportionality, and responsiveness. The framework proposes strategies to address these barriers to healthcare service delivery for persons with disabilities in India. (shrink)

This paper explores the critical roles of researchers in research involving vulnerable populations. Its purpose is to reflect on the complex nature of vulnerability of Bhutanese refugee women who had resettled in Australia involved in research looking at the barriers to accessing preventive cancer screening. First, we describe the vulnerabilities considered prior to the research study and the actions taken to protect participants while the study was conducted. Second, we discuss those vulnerabilities that we did not anticipate, but were subsequently (...) revealed during the study and consequently included in the study findings. These vulnerabilities should be considered for future research involving similar populations. It is important for researchers to use appropriate research designs that enable the voice of vulnerable people to be heard and to use research strategies that ensure findings are robust and participants are protected and empowered. Potential implications include the development of research practices that take account of the sources of vulnerabilities and consideration of how different vulnerabilities can evolve and affect findings and research recommendations. (shrink)

In this paper, we describe the challenges of collecting data in the Māori population for automatic detection of schizophrenia using natural language processing (NLP). Existing psychometric tools for detecting are wide ranging and do not meet the health needs of indigenous persons considered at risk of developing psychosis and/or schizophrenia. Automated methods using NLP have been developed to detect psychosis and schizophrenia but lack cultural nuance in their designs. Research incorporating the cultural aspects relevant to indigenous communities is lacking in (...) the design of existing automatic prediction tools and one of the main reasons is the scarcity of data from indigenous populations. This paper explores the current design of the New Zealand health care system and its potential impacts on access and inequities in the Māori population and details the methodology used to collect speech samples of Māori at risk of developing psychosis and schizophrenia. The paper also describes the major obstacles faced during speech data collection, key findings, and probable solutions. (shrink)