Research > Research Strength: Health Ethics and Human Rights
Research Strength: Health Ethics and Human Rights
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Introduction
Public health researchers are increasingly confronted by new opportunities and challenges associated with emerging issues of the new millennium, including: economic globalisation, conflicts and natural disasters, widening health disparities among populations, ageing, emerging epidemics, climate change and the widespread movements of people through labour and forced migration. In addition, the planning and delivery of health services within populations and communities poses considerable logistical and ideological challenges. The UNSW SPHCM has a number of experts who examine these critical issues from a health ethics and human rights perspective. Researchers at the SPHCM use health ethics as a framework to reflect on issues ranging from clinical trials, health care treatment and health care relationships to the larger macro issues of health care systems, and even further to the broader societal issues of health and social structure. In addition, the SPHCM has a strong base of health and human rights expertise as it hosts the cross-faculty
UNSW Initiative for Health and Human Rights. The Initiative is committed to working across disciplines and borders to develop innovative approaches and solutions to real-world problems. Our researchers confront some of the most pressing health and human rights issues today by strengthening the capacity of governmental, non-governmental and academic institutions to apply health and human rights principles to policy, programmes and practice. Improving the health and wellbeing of people in Australia, the Asia-Pacific and globally requires building on best public health practice and tools and universally established human rights norms and standards as they relate to such critical issues as: HIV/AIDS, pandemic influenza, indigenous health, climate change, refugee and Internally Displaced Persons health, gender inequality and ageing.
Health & Human Rights Research
Timor-Leste Health Care Seeking Behaviour Study
- Prof. Anthony Zwi, Dr. Ilse Blignault, Diana Glazebrook, Veronica Correia, Catherine R. Bateman Steel, Elias Ferreira and Basilio M. Pinto
Despite significant improvements, health status in Timor-Leste is poor. Low rates of use of public health services present a major challenge to improving the health of the people of the country. The Health Care Seeking Behaviour Study (HCSBS) was designed to improve understanding of the underlying issues and factors affecting the use of services, particularly in rural areas, and to provide an evidence base for future health policy, planning and programs.
The HCSBS built on previous research in Timor-Leste, including national surveys and qualitative research, and drew on international studies and theoretical approaches to health care seeking. The Study employed a mixed methods research design and involved field work in all 13 districts. The HCSBS survey drew a sub-sample from the Timor-Leste Survey of Living Standards (TLSLS), to facilitate subsequent data linkage. Health care seeking data were collected from 535 household heads and 771 individuals—404 women and 367 men from these households. The HCSBS qualitative component commenced with 13 entry interviews conducted with village heads (xefe suco). In three of the 13 districts, in-depth interviews were carried out with biomedical and traditional health care providers (32 in all) and health facility users (29). In the remaining 10 districts, focus group discussions were held with married women, married men, adolescent females and adolescent males (38 groups with a total of 261 participants).
This Study provides new and more detailed information about health care practices, including measures taken within the household, and preferences for health services at the village-level. It provides insights into the processes of decision-making and action in rural communities, including choice of particular providers or services—traditional and biomedical, and the various factors that influence those choices. In particular, the Study provides rich qualitative data in relation to three key scenarios: a child with diarrhoea, a difficult birth, and birth spacing. The Study also recorded, in some detail, provider perspectives, including the constraints experienced by government health service providers, as well as the views of users and providers on user-provider interactions. In addition to tables and figures, this Report seeks to present the voices of some of the research participants; these appear in boxes throughout the text and in the appendices where five slightly longer narratives are presented.
The complete Timor-Leste Health Care Seeking Behaviour Study report is available for download in both English and Tetun. The report can also be downloaded here in individual sections.
HIV/AIDS and rehabilitation centres in Vietnam: Sexual and reproductive health needs, care and choices of current and former detainees and their sexual partners
– Prof. Daniel Tarantola and A/Prof. Anna Whelan
It is increasingly being recognised that sexual and reproductive health is a critical need for people living with HIV (PHIV) and populations at greatest risk of acquiring HIV infection. Information and education, complemented by access to services in a supportive environment, determines the capacity of PHIV and those at greatest risk to make informed reproductive choices, adopt and sustain healthy protective behaviours and practices, and protect their sexual partners against HIV and other sexually transmitted infections. Women and men who are current sex workers or injecting drug users (IDUs) are especially at-risk of acquiring HIV, particularly if they have a co-existent sexually transmitted infection. This AusAID-funded project aims to determine how policies, programmes and practices are responding to the sexual and reproductive health needs and choices of current and former detainees of rehabilitation centres and their sexual partners. The project will incorporate a gender and right-based approach analysis to the study findings. In addition, this project will develop a preliminary model for enhanced access to and delivery of sexual and reproductive health information and services, which will guide the development and trialling of resource materials and capacity building interventions for local service providers in 1-2 districts in Hanoi. It will also offer relevant national institutions with precious information on how vulnerable populations can best be served. The project outcome to develop practical applications, approaches and instruments will entail providing capacity building within research and intervention methods for policy makers and practitioners to improve the sexual and reproductive health of the targeted population.
Rights-based approach to cataract care services in Pakistan – Dr. Khabir Ahmad, Supervisors: Profs. Daniel Tarantola and Anthony Zwi
Under a grant award from The Fred Hollows Foundation, the Postgraduate Research Scholarship explores Rights-based approaches to blindness and cataract care services in Pakistan and other developing countries. The project aims to explore cataract-related policies, services and outcomes in Pakistan from the perspective of equality/non-discrimination, participation, and accountability. It also examines cataract care from the perspective of availability, accessibility, acceptability and quality of health facilities, goods and services.
HIV and mental illness in Vietnam
– Ms. Catherine Esposito; Supervisors: Prof. Daniel Tarantola and Dr. Zac Steel (Psychiatry)
People living with HIV and a mental disorder often face social isolation and high levels of stigma. They experience discrimination of their basic rights such as the right to employment, education and health care and can be deprived of their civil rights in the absence of any legal protection from improper treatment. Whilst the expansion of HIV programs has provided an opportunity for integrating mental health care into such programs in high income countries, very limited studies or interventions have been carried out within Asia to determine the prevalence and linkage between HIV and mental disorders such as anxiety or depression or the current capacity and response to manage such illness. This research program will bridge this gap by determining the prevalence of mental health disorders among people with HIV and provide recommendations for policy and programmatic interventions for the target group. International and national human rights standards will be used to incorporate a moral dimension to public health solutions and help ensure people living with HIV and mental disorders can access the highest standard of physical and mental health in such a manner that they are protected from discrimination and afforded their individual dignity.
HIV, sex work and human rights in China (2007 – 2010)
– Ms. Jinmei (Alice) Meng (NCHSR); Supervisors: Dr. Heather Worth (NCHSR) and Prof. Daniel Tarantola
This project aims to explore the decriminalisation of sex work in China in the context of
human rights and the human immunodeficiency virus (HIV) epidemics. The conceptual framework for the study draws from both the theory of universality of human rights and the theory of HIV and human rights reflected in the UNAIDS International Guidelines on HIV / AIDS and Human Rights. The study combines qualitative research and legal research methodologies.
An analysis of selected psychological, social and cultural factors that impact maternal and child health outcomes in urban slums in Bangladesh – Dr. Mohammad Shamsul Arafeen; Supervisors: Dr. Susan Priest and Prof. Daniel Tarantola
For every 100,000 live births taking place in Bangladesh, 380 mothers lose their lives as a result of pregnancy. The research is investigating the roles played by psychological, social and cultural factors in this highly adverse outcome. To this end, concepts and tools were drawn from existing epidemiological and public health research, models for integrated perinatal care and a health and human rights framework. The project has two phases. Phase One will include mapping and analyzing existing maternal and child health care systems; defining the epidemiology of mothers and child mortality and morbidity in the study population; and evaluating current policies and programs relevant to perinatal maternal and child care within a health and human rights framework. Phase Two will develop and test a locally relevant, culturally suitable and potentially sustainable system of perinatal psychosocial assessment and referral.
Refugee health and access to care
- Dr Mohamud Sheikh, Prof Raina MacIntyre
Refugees and Internally Displaced Persons(IDPs)endure conditions of social disconnection, displacement, isolation, famine, war and overcrowding, and are regarded as being among the most poor and marginalised members of the Australian community. They suffer a high rate of social, physical, emotional and mental health problems, many of which are treatable or preventable. Studies suggest that resettled refugees have poor access to diagnostic and therapeutic intervention services. The need for the development of high level management guidelines and cross-cutting intervention to improve their access to healthcare services requires extensive research.
What is the burden of dementia in urban dwelling Indigenous Australians?
- Broe GA, Jackson Pulver LR, Chalkey S, Flicker L, Grayson D.
A joint initiative of the Ageing Research Centre/National Health & Medical Research Council Ageing Well Network, the Prince of Wales Hospital Dementia Collaborative Research Centre, the Prince of Wales Medical Research Institute, the Muru Marri Indigenous Health Unit, SPHCM UNSW.
Working in partnerships and collaborations with a number of Aboriginal communities and organisations throughout NSW, this project is asking the following questions for Aboriginal people living in NSW who are aged 45 years and over: What proportion of Aboriginal people has a dementia? What types of dementia occur amongst Aboriginal people? How is cognitive impairment, leading to dementia, best measured in Aboriginal communities? What is the meaning of "dementia" for Aboriginal people themselves? How is dementia best measured in Aboriginal communities? What are the causes of dementia in Aboriginal communities? Life span causes related to known social, economic and educational disadvantages? Immediate causes related to know high rates and early onset of chronic diseases? Early infections such as otitis media? Mid life heart and vascular diseases and stroke? What problems does dementia cause? How are people with dementia cared for in the communities? What is the burden of dementia for the carers?
Due for completion 2010.
The Gudaga Project: Understanding the health, development and service use of Aboriginal children in an urban environment 2008-2012
- Comino E, Harris E, Jackson Pulver L, Harris M, Smith P, Kong K, Kemp L.
The Gudaga Project - a five year NHMRC funded project - follows a birth cohort of Aboriginal children from birth to 5 years in order to describe their health, development and service (health and children's) use. It is the first study of its kind in Eastern Australia, and is based at the Centre for Primary Health Care and Equity. The research team are working closely with stakeholders in Aboriginal health care including the local Aboriginal community to implement the research. The outcomes of the study will contribute to understanding of the health and other needs of Aboriginal children in an urban Aboriginal community. More information about the Gudaga Project can be viewed here . A paper discussing the project's themes and values with regard to cultural and ethical appropriateness is forthcoming. The Gudaga project is a continuation of the 2006 collaboration:
Health status and development among Aboriginal infants in an urban community
- Comino E, Craig P, Harris E, McDermott D, Harris M, Henry R, Jackson Pulver LR.
The aim of this NHMRC research was to describe the obstetric outcomes and service use for Aboriginal infants and their mothers in an urban community. It also aimed describe health, development and health service use at 12 months for Aboriginal infants in an urban community. Lastly,to identify issues that mothers of Aboriginal infants would like addressed to provide opportunities for themselves and their children to improve their health and well being.
Indigenous Ageing and Cognition Study - Aboriginal Health and Ageing Brief
- Broe GA, Jackson Pulver LR, Arkles R, McDonald H, Chalkey S, Kelso W.
A Project supported by the NSW Health and Ageing Network and developed by the Ageing Research Centre - Prince of Wales Hospital and the Muru Marri Indigenous Health Unit.
This research aims to establish a longitudinal study of Aboriginal health and ageing covering urban and regional/rural contexts. Two main aims are to establish basic care needs and support systems re ageing and disability and to determine longitudinal factors for successful and unsuccessful cognitive ageing with an emphasis on educational and social factors.
"Aboriginal Ageing: Is there such a thing?" presented at the Social Policy Research Centre Seminar Program, Session, 2, 2007, can be viewed here .
An Overview of the Current Knowledge of the Social Determinants of Indigenous Health
- Jackson Pulver L & Harris E (Australia); Waldon J. (New Zealand)
Commission on Social Determinants of Health, World Health Organisation
This working paper was prepared for the 2007 Symposium on the Social Determinants of Indigenous Health in Adelaide as part of the work of the World Health Organisation's Commission on Social Determinants of Health. The report looks at indigenous health and inequalities between indigenous and non-indigenous populations internationally. It then looks at the social determinants that underpin these inequalities. Our work was to contribute information from Australia and New Zealand, which appears in Chapter 9 (from p. 89). Large file warning. Download here.
Barawul Yana: Better strategies for the recruitment, retention and support of Indigenous medical students in Australia - A NSW Report
- Jackson Pulver L, Green S, Arkles R, Guthrie J, Sutherland S, Dance P, Dejanovic A, McDermott D.
The UNSW component of the Footprints to the Future collaboration investigating the recruitment and retention of Indigenous students in medicine. Barawul Yana identified the high school years as an important window of opportunity for encouraging and supporting the retention of Indigenous students through to tertiary education. A core component of the research was to examine the role of unversity-based health career residential programs in facilitating the entry of students into higher degrees in medicine and other health professions.
Published as Barawul Yana: Better strategies for the recruitment, retention and support of Indigenous medical students in Australia - A NSW Report. September 2007. A community report has also been prepared.
Evaluation of the Tirkandi Inaburra Cultural and Development Centre Program
- Spooner C, Cunneen C, Jackson Pulver L, Howard J.
Evaluation of a voluntary three to six month program which aims to empower Aboriginal youth to develop and draw on their own resilience in order to take responsibility for their own lives, develop strategies to deal with their problems and hence minimize the risk of becoming involved in the criminal justice system.
Early results of the evaluation presented at the 2007 Australian Social Policy Research Conference can be viewed here .
'Filling the Gap' Indigenous Dental Program
- Jackson Pulver LR, Fitzpatrick S, Ritchie J, Norrie M.
Wuchopperen Health Service Board of Directors, 'Filling the Gap' Steering Committee
'Filling the Gap' enables the provision of services by qualified dental practitioners who volunteer to provide oral health and dental services to clients of Wuchopperen Health Service in Cairns, Queensland. This evaluation sought to ascertain the worth or value of the program, which has been running for two years, to all parties involved, and to examine barriers and enablers to the program's provision as well as its sustainability. A recent PowerPoint of the evaluation delivered at the 2009 ADA Conference in Perth can be downloaded here. Large file warning.
Recent publications on Health and Human Rights:
2009
Tarantola D and Gruskin S (2009) ‘Universal Access: Are National Strategic Plans Sensitive to Human Rights?’ in: RG Marlink, SJ Teitelman, (eds) From the Ground Up: Building Comprehensive HIV/AIDS Care Programs in Resource-Limited Settings Washington, DC, Elizabeth Glaser Pediatric AIDS Foundation, pp 331-350 [In Print]
Matthews A, Jackson Pulver LR*, Ring IT. 'Strengthening the link between policy formulation and implementation of Indigenous health policy directions.' Australian Health Review, November 2008; 32(4): 613-625.
Esposito C, Steel Z, Tarantola D (2009) ‘The prevalence of depression among men living with HIV in Vietnam’ American Journal of Public Health [Accepted April 2009]
Tarantola D, Amon, J., Zwi, A., Gruskin, S., Gostin, L (2009) 'H1N1, public health, security, bioethics, and human rights' [Letter] The Lancet 373:2107-8.
Tarantola D (2009) 'H1N1 Flu and the Tartar Steppe' [Editors Choice] American Journal of Public Health
Jurgens R, Cohen J, Tarantola D, Heywood M, Carr R (2009) ‘Universal voluntary HIV testing and immediate antiretroviral therapy’ [Correspondence Letter] The Lancet 373:1079
2008
Gruskin S and Tarantola D (2008) ‘Universal Access to HIV prevention, treatment and care: assessing the inclusion of human rights in international and national strategic plans’ AIDS 22 (Suppl 2): S113-S121
Tarantola D, Byrnes A, Johnson M, Kemp L, Zwi AB, Gruskin S (2008) ‘Human Rights, Health and Development’ Australian Journal of Human Rights,
Tarantola D, Byrnes A, Johnson M, Kemp L, Zwi AB, Gruskin S ‘Human Rights, Health and Development’ Technical Series Paper #08.1, UNSW at http://www.ihhr.unsw.edu.au/publications/papers.html
Tarantola D ‘A perspective on the history of health and human rights: from the Cold War to the Gold War’ J Public Health Policy 2008;29(1).
Hallgath L and Tarantola D (2008) ‘A rights-based approach to the assessment of global health initiatives’ Australian Journal of Human Rights.
Matthews A, Jackson Pulver LR*, Ring IT. 'Strengthening the link between policy formulation and implementation of Indigenous health policy directions.' Australian Health Review, November 2008; 32(4): 613-625.
Jackson Pulver LR* & Fitzpatrick S*. 'Beyond Sorry - the first steps in laying claim to a future that embraces all Australians.' MJA, 2008; 188(10): 556-558.
Tarantola D (2008) ‘A perspective on the history of health and human rights: from the Cold War to the Gold War’ Journal of Public Health Policy 29(1):42-53
Tarantola D and Sofia Gruskin (2008) (Co-editors with Strathdee S of the Supplement Issue) ‘Pragmatic pathways to universal access: leadership, equity, accountability and partnerships in HIV prevention and care’ [Editorial] AIDS 22 (Suppl 2): S1-S2Klinken Whelan A (2008) Culture, health and inequities: new paradigms, new practice imperatives. J Research in Nursing 13(2):149-150
Matthews C, Klinken Whelan A, Johnson M, Noble C (2008) A piece of the puzzle – the role of ethnic health staff in hospitals. Australian Health Review
Garrett PW, Forero R, Dickson HG, Klinken Whelan A (2008) Communication and Healthcare Complexity in People with Little or No English: The Communication Complexity Score. Ethnicity and Health
Fitzpatrick S*, Greer S, Jackson Pulver LR*. Submissions 57 & 57A. 'Overcoming Indigenous disadvantage in New South Wales.' Final report. Standing Committee on Social Issues. Sydney, NSW, 2008.
2007
Tarantola D (2007) ‘The interface of mental health and human rights in Indigenous populations: triple jeopardy and triple opportunity’ Australasian Journal of Psychiatry, 15(Suppl):S10-S17
Graham S, Jackson Pulver LR*, Wang YA, Kelly PM, Laws PJ, Grayson N, Sullivan EA. 'The urban-remote divide for Indigenous perinatal outcomes.' MJA, 2007: 186(10): 509-512.
Gruskin S, Mills EJ, Tarantola D (2007) ‘History, principles and practice of health and human rights’ Lancet (Health and Human Rights Series 1), 370(9585):449-55
Nelson CB, Birmingham M, Costa A, Daviaud J, Perea W, Tarantola D et al (2007) ‘Public-private partnership to develop an affordable vaccine for an emergent threat: the trivalent Neisseria meningitides ACW135 Polysaccharide vaccine’ Am J Public Health, 97(Suppl 1):S15-22
Tarantola D (2007) ‘Global justice and human rights: health and human rights in practice’ Global Justice: Theory, Practice, Rethoric, 1:11-26
Tarantola D, Macklin R, Reed ZH, Osmanov S, Stobie M, Hankins C and Kieny MP (2007) ‘Ethical considerations related to the provision of care and treatment in vaccine trials’ Vaccine, 25:4863-74
Gruskin S and Tarantola D (2007) ‘Global issues: health and human rights, overview’ in: Heggenhougen K (ed) Encyclopedia of Public Health Elsevier
Tarantola D and Gruskin S (2007) ‘Policy: human rights approach to public health policy’ in: Heggenhougen K (ed) Encyclopedia of Public Health Elsevier
Whelan A. & Blogg J (2007) Halfway People: Refugee Views of Reproductive Health Services” Global Public Health, Vol 2 (4):373-394
Jackson Pulver LR*, Harris E, Waldon J. Chapter 9, 'Australia and New Zealand', in An Overview of Current Knowledge of the Social Determinant of Indigenous Health commissioned by the Commission on Social Determinants of Health, World Health Organisation, 2007.
Arkles, R*, Guthrie, J, Sutherland, S, Dance, P, Dejanovic, A*, McDermott, D*, Jackson Pulver, L*. 'Barawul Yana: Better strategies for the recruitment, retention and support of Indigenous medical students in Australia.' Muru Marri Indigenous Health Unit Monograph Series, September 2007.
Fitzpatrick S* (Editor). 'Success Stories in Indigenous Health.' Sydney: Australians for Native Title & Reconciliation (ANTaR), 2007.
Tarantola D (2007) ‘Of public health, policies, politics and trees’ [Editor’s Choice Editorial] Am J Public Health 97(11):1993.
Tarantola D and Gruskin S (2007) ‘New guidance on recommended HIV testing and counselling’ [Commentary] Lancet 370(9583):202-3.
2006
Anderson I, Crengle S, Leialoha Karnaka M, Chen T, Palafox N, Jackson Pulver L*. 'Indigenous health in Australia, New Zealand, and the Pacific.' The Lancet, May 2006; 367: 1775-1785.
Sheikh-Mohammed M. Macintyre CR. Wood NJ. Leask J. Isaacs D. Barriers to access to health care for newly resettled sub-Saharan refugees in Australia. Medical Journal of Australia. 185(11-12):594-7, 2006.
Leask J. Sheikh-Mohammed M. Macintyre CR. Leask A. Wood NJ. Community perceptions about infectious disease risk posed by new arrivals: A qualitative study. Medical Journal of Australia. 185(11-12):591-3, 2006 Dec 4-18.
Grove N, Zwi AB, Silove D, Tarantola D. Psychosocial health and human rights: Fair weather friends? Examining post-Tsunami interventions in conflict-affected areas. Australian Journal of Human Rights, 2006; Vol 11 (2)
Whelan A and Matters P, (2002) Pacific Solution: part of the problem, Intouch vol 19 (6) July/August:4-5. Public Health Association of Australia, Canberra
Whelan A (2002) Refugees and Population Policy: a new language and ethical base is needed, Intouch vol 19 (2) March:10-11. Public Health Association of Australia, Canberra
Health Ethics Research
Publishing ethics
– Prof. Raina MacIntyre
Prof Raina Maclntyre has an interest in the ethics of publication, publication bias, industry influence on publishing and editorial independence. She is a member of the World Association of Medical Editors which regularly discusses such issues. She also has an interest in doctors and dual loyalty, and in introducing more extensive teaching for medical students and postgraduate students in this area.
Ethics of the Detention of Asylum Seekers
- Dr Mohamud Sheikh, Prof Raina MacIntyre
Dr Mohamud Sheikh and Professor MacIntyre have an interest in the ethics of detention of asylum seekers and other people.
Recent publications on Health Ethics
Ritchie J*, Zwi AB, Blignault I*, Bunde-Birouste A, Silove D. 'Insider-outsider positions in health-development research: reflections for practice.' Development in Practice, 2009: 19(1): 106-112.
Sheikh-Mohammed M, Perera S, MacIntyre CR. Preventive detention: the ethical ground where politics and health meet. Focus on asylum seekers in Australia. Journal of Epidemiology and Community Health. In Press 2008.
Liyanage SS, MacIntyre CR. Do financial factors such as author page charges and industry funding impact on the nature of published research in infectious diseases? Health Information & Libraries Journal, Volume 23 Page 214 - September 2006
MacIntyre CR. King CL. Isaacs D. Ethics and access to teaching materials in the medical library: the case of the Pernkopf atlas. Medical Journal of Australia. 184(5):254-5, 2006 Mar 6.
Asante AD, Zwi AB. Public-private partnerships and global health equity: prospects and challenges. Indian Journal of Medical Ethics 2007; Vol IV (4): 176-180.
Zwi AB, Grove NJ, Pittaway E, Mackenzie C, Zion D, Silove D, Tarantola D. Placing ethics in the centre: negotiating new spaces for ethical research in conflict situations. Global Public Health 2006; 1 (3) : 264-277.