Read the terms of reference below.
The role of the Committee
The National Advisory Committee on Health and Disability Support Services Ethics (the National Ethics Advisory Committee) is a ministerial advisory committee established under section 92 of the Pae Ora (Healthy Futures) Act 2022 (the Act). The National Ethics Advisory Committee is established by and accountable to the Minister of Health.
Functions of the Committee
The National Ethics Advisory Committee’s statutory functions are to:
- provide advice to the Minister of Health on ethical issues of national significance in respect of any health and disability matters (including research and health services)
- determine nationally consistent ethical standards across the health and disability sector and provide scrutiny for national health research and health services.
As part of its functions the Committee is also required to:
- consult with any members of the public, persons involved in the funding or provision of services, and other persons that the committee considers appropriate before providing advice on an issue (section 92(4) of the Act refers)
- at least annually, deliver to the Minister of Health a report setting out its activities and summarising its advice on the matters referred to it under section 92 of the Act by the Minister of Health.
In undertaking its functions, the Committee is expected to:
- provide advice on priority issues of national significance as requested by the Minister of Health
- provide advice to the Minister of Health regarding ethical issues concerning emerging areas of health research and innovative practice. The advice is to include the Committee’s rationale for its advice and any relevant evidence and/or documentation
- provide advice to the Minister of Health regarding aspects of ethical review in New Zealand, including the setting of principles and guidelines in relation to each of the different types of health research and innovative practice. The advice is to include the Committee’s rationale for its advice and any relevant evidence and/or documentation
- develop and promote national ethical guidelines for health research and health and disability support services. The guidelines should address how to conduct different types of health research (including ethical issues relating to Māori health research) and innovative practice in an ethical manner and should establish parameters for, and provide guidance on, the ethical review of such types of health research and health and disability support services.
- monitor and review the operation of the health and disability ethics committees for the purposes of providing direction, guidance and leadership to ensure the ongoing quality and consistency of ethical review in the health and disability sector
- undertake its tasks in a manner consistent with the principles of the Treaty of Waitangi
- develop guidelines on conducting observational studies in an ethical manner and establish parameters for the ethical review of observational studies (including guidance on weighing up the harms and benefits of this type of research).
Composition of the Committee
The National Ethics Advisory Committee will have a maximum of 12 members appointed by the Minister of Health.
The Committee’s membership must include:
- two health professionals (one of whom must be a registered medical practitioner)
- three community/consumer representatives (must not be health professionals, health researchers, or professional members)
- one member nominated by the Health Research Council of New Zealand
- two or more Māori members (one of whom must have a background in Māori research and/or ethics).
The membership must also have expertise in the following areas:
- ethics
- research (qualitative and quantitative)
- epidemiology
- law.
Terms and conditions of appointment
Members of the National Ethics Advisory Committee are appointed by the Minister of Health for a term of up to three years. The terms of members of the Committee will be staggered to ensure continuity of membership. No member may be appointed for more than six consecutive years unless an additional period of up to twelve months is confirmed to allow for continuity of projects.
Unless a person sooner vacates their office, every appointed member of the Committee will continue in office until their successor comes into office.
Any member of the Committee may at any time resign as a member by advising the Minister of Health in writing.
Any member of the Committee may at any time be removed from office by the Minister of Health for inability to perform the functions of office, bankruptcy, neglect of duty, or misconduct, proved to the satisfaction of the Minister.
The Minister may from time to time alter or reconstitute the Committee, or discharge any member of the Committee or appoint new members to the Committee for the purpose of decreasing or increasing the membership or filling any vacancies.
Chairperson & Deputy Chairperson
The Minister will from time to time appoint a member of the National Ethics Advisory Committee to be its Chairperson. The Chairperson will preside at every meeting of the Committee at which they are present. The Chairperson may appoint a member as Deputy Chairperson, in consultation with the Minister. The Deputy Chairperson may exercise the powers of the Chairperson in situations where the Chairperson is not present or is unable to act (eg, if the Chairperson has a conflict of interest).
Duties and responsibilities of a member
This section sets out the Minister of Health’s expectations on the duties and responsibilities of a person appointed as a member of the National Ethics Advisory Committee. This is intended to aid members by providing them with a common set of principles for appropriate conduct and behaviour and serves to protect the Committee and its members.
As an independent statutory body, the Committee conducts its activities in an open and ethical manner, and operates in an effective and efficient way within the parameters of its functions as set out in its Terms of Reference.
Committee members should have a commitment to work in the best interests of the Committee.
Members are expected to make every effort to attend all the Committee meetings and devote sufficient time to become familiar with the affairs of the Committee and the wider environment within which it operates.
Members are expected to act responsibly with regard to the effective and efficient administration of the Committee and the use of Committee funds.
Members will:
- be diligent, prepared and participate
- be respectful, loyal and supportive
- not denigrate or harm the image of the Committee.
The Committee as a whole will:
- ensure that the independent views of members are given due weight and consideration
- ensure fair and full participation of members
- regularly review its own performance
- act in accordance with the principles of the Treaty of Waitangi.
Conflicts of interest
- Members must perform their functions in good faith, honestly and impartially, and avoid situations that might compromise their integrity or otherwise lead to conflicts of interest. They must also be, and be seen to be, independent of the Minister of Health and the Ministry of Health. Proper observation of these principles will protect the National Ethics Advisory Committee and its members and will ensure it retains public confidence.
- Members attend meetings and undertake Committee activities as independent persons responsible to the Committee as a whole. Members are not appointed as representatives of professional organisations and groups. The Committee should not, therefore, assume that a particular group’s interests have been taken into account because a member is associated with a particular group.
- Members are required to declare any actual or perceived interests to the full Committee. The Committee will then determine whether or not the interest represents a conflict, and if so, what action will be taken.
- The Chairperson will ask members to declare any actual or perceived interests at the start of each meeting.
Confidentiality
General
- The public has a right to be informed about the issues being considered by the National Ethics Advisory Committee. The Committee should have procedures in place for the release of information and processing requests for information.
- Individual members must observe the following duties in relation to Committee information. These provisions ensure that the Committee as a whole maintains control over the appropriate release of information concerning issues before it.
General meeting discussions
- Key discussion points in meetings are recorded in the meeting minutes. Upon request, a member’s dissenting views may be recorded in the meeting minutes.
- Members must ensure that the confidentiality of Committee business is maintained. Members must be clear about what Committee matters are permitted to be discussed with people that are not Committee members and, in doing so, should be familiar with the information that is publically available about the Committee’s work.
- Meetings of the Committee, including agenda material and draft minutes, are confidential. Committee members must ensure that Committee documents are kept secure to ensure that the confidentiality of Committee work is maintained. Committee correspondence or papers can only be released with the approval of the Committee.
- Members are free to express their own views within the context of Committee meetings, or as part of the general business of the Committee.
- Members may communicate general meeting discussions with other Committee members that were not present during at the meeting.
- At no time should members individually divulge details of Committee matters or decisions of the Committee to persons who are not Committee members. Disclosure of Committee business to anyone outside the Committee must be on the decision of the Committee, or between meetings, at the discretion of the Chairperson. In choosing to release or withhold information, the Committee must comply with the provisions of the Official Information Act 1982 and the Privacy Act 1993.
‘In committee’ discussions
- At no time will a Committee member discuss the conduct or performance of another member who is not present at the ‘in committee’ session.
- The meeting minutes will note that an ‘in committee’ session took place. A record of ‘in committee’ discussions will be kept in the Chairperson’s notes.
- ‘In committee’ discussions can be communicated with other Committee members who were not present during the ‘in committee’ session. This can either be done formally by the Chairperson or informally by another Committee member.
Media policy
- Only the Chairperson is authorised to comment publicly on the affairs and policies of the Committee, and where appropriate, the Chairperson will advise the Minister of Health in advance. The Chairperson may delegate comment to other Committee members.
- Where the Chairperson has delegated comment to another Committee member, the member must publicly support a course of action decided by the Committee. If unable to do so, members must not publicly comment on decisions.
- The Chairperson, members and Secretariat will not support any action or public statement that is derogatory or in any way damaging to the Committee.
- Members have the right to comment to the media on any matter in their professional capacity, as long as they do not attribute the comment to the Committee or imply that they are speaking on behalf of the Committee. If a member is forewarned of being asked to comment to the media, they should advise the Committee accordingly. If a Committee member is not forewarned, they should advise the Chairperson immediately after making comment to the media.
Working arrangements
- The National Ethics Advisory Committee will agree a work programme with the Minister of Health.
- In carrying out its Terms of Reference, the Committee must:
- provide the Minister of Health with advance notice of any media statements or reports to be published
- ensure its advice is published and widely available
- ensure that, in developing any advice and guidelines, an appropriate balance exists between protecting the rights and wellbeing of patients and research participants, and facilitating health research and innovative practice
- ensure that, where appropriate, any advice or guidelines contain clear guidance on the application of ethical principles that is appropriate to the type of health research or innovative practice being considered (due regard should be given to the different nature of qualitative and quantitative approaches to research)
- ensure that any advice and guidelines comply with the laws of New Zealand
- ensure appropriate consultation has occurred in accordance with the requirements set out below.
Consultation
In meeting its obligations to consult before providing advice to the Minister, the National Ethics Advisory Committee will, where appropriate, make reasonable attempts to consult with:
- health and disability ethics committees
- the Advisory Committee on Assisted Reproductive Technology
- the Health Research Council Ethics Committee
- any other Ethics Committee established by the Minister of Health
- organisations that represent affected patients or other groups of the community
- relevant whānau, hapū and iwi
- a reasonably representative sample of affected patients or members of the public or, if the Committee thinks it more appropriate, a reasonably representative sample of people who would be entitled to consent on behalf of the affected patients or members of the public
- a reasonably representative sample of affected health researchers and/or affected health professionals
- relevant government bodies.
The Committee will ensure that stakeholders are provided with feedback following consultation, in line with good consultation practice.
Performance measures
The National Ethics Advisory Committee will be effectively meeting its tasks when it provides relevant and timely advice to the Minister of Health based on research, analysis and consultation with appropriate groups and organisations.
The Committee must:
- agree in advance to a work programme with the Minister of Health
- achieve its agreed work programme
- stay within its allocated budget.
Meetings of the Committee
- Meetings will be held at such times and places as the National Ethics Advisory Committee or the Chairperson of the Committee decides.
- At any meeting, a quorum will consist of six members. A quorum must include either the Chairperson or Deputy Chairperson. An effort will be made to ensure reasonable representation of community/consumer members and members with specialist knowledge and experience.
- Every question before any meeting will generally be determined by consensus decision-making. Where a consensus cannot be reached a majority vote will apply. Where a decision cannot be reached through consensus and a majority vote is made, the Chairperson will have the casting vote.
- Subject to the provisions set out above, the Committee may regulate its own procedures.
Reporting
The National Ethics Advisory Committee will:
- keep minutes of all Committee meetings which outline the issues discussed and include a clear record of any decisions or recommendations made
- prepare an annual report to the Minister of Health setting out its activities and comparing its performance to its agreed work programme and summarising any advice that it has given to the Minister of Health (as per section 92(6) of the Act). The report is to include the Committee’s rationale for its advice and any relevant evidence and/or documentation. This report will be tabled by the Minister of Health in the House of Representatives pursuant to section 92(7) of the Act.
Secretariat
The Ministry of Health will provide dedicated analytical policy and administrative support to the National Ethics Advisory Committee through Secretariat staff, consistent with the Memorandum of Understanding between the Committee and the Ministry of Health. Secretariat staff are Ministry employees and are funded through the Committee’s allocated budget.
Fees and allowances
- Members of the National Ethics Advisory Committee are entitled to be paid fees for attendance at meetings. The level of attendance fees are set in accordance with Cabinet Office Circular CO (12) 6, Fees framework for members appointed to bodies in which the Crown has an interest.
- The Chairperson will receive $452 per day (plus half a day’s preparation fee) and an allowance of two extra days per month to cover additional work undertaken by the Chairperson.
- The attendance fee for members is set at $336 per day (plus half a day’s preparation fee).
- The Ministry of Health pays for actual and reasonable travel and accommodation expenses of the Committee members.
