The pdf Constitution of the Aboriginal Health and Medical Research Council (AH&MRC) (6.36 MB) requires it to operate an Ethics Committee.
The AH&MRC Ethics Committee operates as a Human Research Ethics Committee under the National Health and Medical Research Council (NH&MRC) legislation. The Committee is assessed annually by the NH&MRC to ensure that it meets NH&MRC Guidelines.
The role of the AH&MRC Ethics Committee is to assess research proposals affecting the health and wellbeing of Aboriginal people and communities in NSW, and to monitor the collection of data on Aboriginal health to ensure these activities will be conducted ethically. This role is endorsed by the NSW Health Department and embodied within the NSW Aboriginal Health Information Guidelines which guide all NSW government agencies responsible for the management of Aboriginal health and health-related information.
The Committee meets every 2 months. All meetings are held on a Monday. There are limited circumstances when an application will be considered for ethical review between meetings. Researchers should contact the AH&MRC Ethics Committee Secretariat as soon as possible to discuss this further.
An application must be received two weeks before a meeting if it is to be considered by that meeting.
The planned meeting dates are as follows:
|1/18||January 22||February 5|
|2/18||March 5||March 19|
|3/18||April 16||April 30|
|4/18||June 4||June 18|
|5/18||July 16||July 30|
|6/18||August 27||September 10|
|7/18||October 15||October 29|
|8/18||November 26||December 10|
Who should submit an application?
The Committee considers applications relating to research that may affect the health and well-being of Aboriginal people and communities.
The project should involve research in, or concerning, New South Wales. Where projects also involve research outside New South Wales, an ethics application must also be made to the relevant Aboriginal HREC(s) in the other states and territories.
An application should be made for research for which any one of the following applies:
- The experience of Aboriginal people is an explicit focus of all or part of the research;
- Data collection is explicitly directed at Aboriginal peoples;
- Aboriginal peoples, as a group, are to be examined in the results;
- The information has an impact on one or more Aboriginal communities;
- Aboriginal health funds are a source of funding.
Applications are received from the full range of people and organisations conducting research that meet the above criteria, including staff from universities, research institutes, Aboriginal Community Controlled Health Services (ACCHSs), the NSW Department of Health, and community agencies; undergraduate and post-graduate students; and independent researchers.
There are a number of different types of research where researchers have sought advice in the past. The following provides some examples as guidance for researchers.
It is emphasised that the following points provide guidelines only and that each specific case will need to be considered against the particular circumstances of that case. If you are unsure, you should contact the Secretariat.
I) Research concerning the general population
Research that is not specifically directed at Aboriginal people or communities, such as for the total population or a sub-population (eg. rural NSW, people over 50 years old) can still potentially impact on Aboriginal people.
However, an application for such research need only be made to the Committee if any one of the following applies:
- Any of the five factors listed above are present; or
- Aboriginal people are known, or are likely, to be significantly over-represented in the group being studied (eg. compared to the 2.5% of the total NSW population as shown in the 2011 Census); or
- The Aboriginal experience of the medical condition being studied is known, or is likely, to be different from the overall population; or
- There are Aboriginal people who use the services being studied in distinctive ways, or who have distinctive barriers that limit their access to the services; or
- It is proposed to separately identify data relating to Aboriginal people in the results.
II) Research where health is not a major focus
Some research may have some reference to health issues, but be essentially about other matters, such as education, social welfare, justice, etc, and thus an application to this committee may not be necessary. However, terms such as ‘resilience’ and ‘well-being’ in the description and design of the project may indicate that it has important health implications.
III) Program planning, monitoring, and quality improvement activities
Organisations undertake a range of research-type activities aimed at planning, monitoring, or ensuring the quality of their policy, programs, and operation.
There are two government documents that provide guidance on how to determine if a project is predominantly ‘quality improvement ’ rather than research:
- NHMRC (2014) Ethical Considerations in Quality Assurance and Evaluation Activities
- Ministry of Health (2007) Human Research Ethics Committees - Quality Improvement & Ethical Review: A Practice Guide for NSW
In general, even where such activities involve a study of client records and/or interviews with clients, an application to the Committee is not necessary if all of the following apply:
- Any questions to participants or discussions with them relate only to (i) their experience of a specific programs or material, or their use of a program and/or their perception of factors affecting their use of and benefits from that program, or (ii) their views about specific aspects of proposed programs (eg. new information material, changed hours of operation, etc); and
- The information to be obtained will be for internal use only and will not be published in any form externally; and
- Aboriginal people with expertise and experience in the subject matter of the research will be actively involved in the design and conduct of any such activities significantly affecting Aboriginal people; and
- Ethics approval for the activity or for similar activities has not been sought from another ethics committee.
IV) Applications to Other Human Research Ethics Committees
If your research project meets the above conditions you should submit an application to the AH&MRC Ethics Committee even if you have obtained approval from the HREC in your institution or organisation.
Most research projects for which the AH&MRC Ethics Committee receives applications are also submitted to at least one other Human Research Ethics Committee (eg. a University HREC, or a NSW Department of Health Area Health Service HREC).
For some projects, University and Area Health Service HRECS have required researchers to obtain AH&MRC approval before they will grant ethics approval.
The AH&MRC Ethics Committee is prepared to accept an application at any stage of its progress with another HREC. Each individual researcher can decide whether he/she will seek AH&MRC approval before submitting to other HRECs, or after approval by other HRECs, or simultaneously.
Your application to the AH&MRC Ethics Committee should enclose copies of:
- Your application to one other HREC.
- Approval letters from other HRECs.
- Requests to you from other HRECs for additional information about your application, together with your responses to the requests.
V) Aboriginal HRECs in other States and Territories
Where projects also involve research outside New South Wales, an ethics application must also be made to the relevant Aboriginal HREC(s) in the other states and territories.
The following Aboriginal HRECs operate outside New South Wales:
- South Australian Aboriginal Health Research and Ethics Committee
- Western Australian Aboriginal Health Information and Ethics Committee
- (Northern Territory) Top End Human Research Ethics Committee
- (Northern Territory) Central Australian Human Research Ethics Committee
VI) AH&MRC Guidelines for Research in Aboriginal Health – Key Principles
The AH&MRC document Guidelines for Research in Aboriginal Health - Key Principles, is the core document used by the Committee in assessing applications.
Complaints Handling Procedures
The AH&MRC and the Ethics Committee have established procedures for addressing complaints about ethical matters in current research in Aboriginal health. In general, this is meant to cover research projects that have been approved by the Ethics Committee, but assistance may be provided for complaints relating to Aboriginal people or communities in general health research.
All correspondence containing complaints or concerns about research should be sent to:
AH&MRC Ethics Committee
Aboriginal Health & Medical Research Council of NSW
PO Box 1565
Strawberry Hills, NSW 2012
a) Role of the Committee
The role of the AH&MRC Human Research Ethics Committee (HREC) is to assess research proposals affecting the health and wellbeing of Aboriginal people and communities in NSW, and to monitor the collection of data on Aboriginal health to ensure these activities will be conducted ethically.
The role of the Ethics Committee is endorsed by the NSW Health Department and embodied within the NSW Aboriginal Health Information Guidelines which guide all NSW government agencies responsible for the management of Aboriginal health and health-related information. These Guidelines operate in conjunction with the NSW Aboriginal Health Partnership, a formal agreement between the NSW Government and the AH&MRC.
The AH&MRC and its Ethics Committee are committed to supporting high quality projects in health and medical research that increase scientific knowledge, are of benefit to Aboriginal communities, are sensitive to Aboriginal culture, ensure Aboriginal community control of the research, and build the capacity of Aboriginal communities and the Aboriginal health workforce to conduct and assess research.
b) The Committee as a Representative of Aboriginal Communities
The AH&MRC is the representative body of Aboriginal Community Controlled Health Services (ACCHSs) in New South Wales. ACCHSs have been established to ensure that Aboriginal people and Aboriginal communities have control over health services affecting them. A major role of the AH&MRC Ethics Committee in considering applications for ethical approval for a research project is to represent the views and interests of Aboriginal people across New South Wales.
The Ethics Committee is comprised of Aboriginal health professionals and community-based people, together with medical and legal members who have expertise and experience in Aboriginal health and research. This gives the Committee a unique capacity to assess the extent of the support of Aboriginal communities for a research project; the capacity of researchers to work ethically with Aboriginal people and communities; and the validity and usefulness of the research.
c) History of the Committee
The Committee was established in 1996 by the forerunner to the AH&MRC (the NSW Aboriginal Health Resources Cooperative) in response to the fact that for many years much health and medical research about Aboriginal people had been invasive, inappropriate, unnecessary, and undertaken without consultation with or approval by Aboriginal people and communities.
In the period since its establishment, the Committee has considered over 790 research proposals and data publications that have been referred to it for approval.
Since the beginning of 2007, the Committee has considered applications relating to over 220 projects. These applications have come from a very diverse range of fields, including ageing, blood thinners, brain injury, bone health, cancer, child welfare placements, chiropractics, chlamydia, chronic disease, coronary disease, dementia, diabetes, disability, domestic violence, drug and alcohol conditions and services, eye conditions, genetics, happiness, home medicines, homeless women and their children, immunisation, mental health, midwifery, otitis media, pharmacogenetics, pre-natal conditions and services, prisoners and young people in detention, postnatal depression, pregnancy, renal disease, sexually transmitted conditions and treatments, smoking, speech pathology, and swine influenza.
The projects for which applications have been made also include research on various programs and interventions, including the role of ACCHSs in developing community capacity, brokerage with mainstream health services, community and family resilience, construction of health-related buildings, fruit and vegetable programs, general practitioner training, health promotion, housing for people with HIV, liveable communities paediatric clinics, privacy implications of epidemiological research, statistics on birth and deaths, water and sewerage programs.
Review of the Committee
In 2006, the AH&MRC Board commissioned the former Director-General of NSW Health, Michael Reid, to conduct a review of the Committee (Reid Review). Following the review, which was supported and funded by NSW Health, the membership and secretariat of the Committee were reconstituted from the beginning of 2007 and a range of measures have been put in place to enhance its operation. The first meeting of the new Committee was held in April 2007.
d) Composition of the Committee
The composition of the current AH&MRC Ethics Committee is in line with the recommendations of the Reid Review, the requirements of the National Statement on Ethical Conduct in Human Research (2007) and the requirements of the NSW Department of Health for ethics lead agencies.
The Committee includes representatives of the AH&MRC Board, members of local ACCHSs, Aboriginal elders, lay representatives of the Aboriginal community, and members who have qualifications and long experience in medicine, medical research, clinical work, and health-related law.
e) External Reference Panel
The Reid Review recommended that “The Ethics Committee should establish a specialist reference panel to provide advice to the Committee, when required, on the scientific merit of research proposals.”
It was not intended that the Panel would meet as a group, but rather be comprised of a number of experts with scientific and technical expertise in their field who can be asked for advice as required on specific applications for ethics approval or on broader issues affecting their field.
The External Reference Panel is now well-established, and will continue to be developed. Over forty people who are eminent in their field and experienced in working with indigenous people, have accepted membership of the Panel. The members of the Panel cover a diverse range of health and medical fields.