The National Ethics Advisory Committee’s National Ethics Standards for Health and Disability Research are now open to the public for feedback.
Please forward this to anyone you think would have an interest in commenting.
The consultation will be open until 5pm, 20 September
To take part in the consultation, please complete the online consultation at https://consult.health.govt.nz/neac/national-ethics-standards/ (Citizen Space).
If you cannot complete the consultation online please print out this document, write your submission and send it to:
NEAC Secretariat, Ministry of Health, PO Box 5013 , Wellington 6011
There will also be public face to face meetings during the consultation. Please see https://neac.health.govt.nz/draft-national-ethical-standards-health-and-disability-research-consultation-document for meeting dates and venues.
Some of these meetings are still being arranged, so check back in a few weeks.
If you have any questions, please contact us by email at neac@moh.govt.nz.
Summary of consultation
The key objectives of the standards are to:
· safeguard the rights and interests of participants in research
· promote high-quality ethical research for social, cultural and economic wellbeing
· reflect the principles of the Treaty of Waitangi
· foster awareness of ethical principles and practices among health care providers, researchers and the wider community
· help researchers think through and take responsibility for the ethical issues in their studies
· help researchers give due consideration to local and national community views and perspectives
· protect and reassure the community.
NEAC is seeking feedback on the following:
· whether the Standards are fit for purpose: are the contents of the Standards helpful, clear, relevant and workable?
· whether the Standards covers all relevant ethical issues: are there matters missing which on topics where ethical guidance should be provided? Are there any conflicts with other standards, laws or current pieces of work that should be considered?
· general feedback: should any paragraphs be amended? Are there terms that are confusing or could be better defined?
NEAC is aware of the complexity of ethical issues surrounding health and disability research. Therefore the consultation document provides the opportunity to provide detailed feedback on specific areas of the draft standards. As a submitter you are welcome to provide as much or little feedback as you want.
This consultation standards is sectioned into two parts.
The first is about the Standards as a whole, and asks questions about the new structure, the scope of the standards and whether they are complete. These are required to be completed.
The second part of the consultation is asks questions about each individual section (Ethical principles onwards).
You do not have to provide feedback on every section / chapter.
Each section has a set of standard questions, as well as some particular questions relevant to that section.
Background
NEAC is an independent advisor to the Minister of Health. NEAC was established in 2001 by section 16 of the New Zealand Public Health and Disability Act 2000.
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.
In 2015 NEAC committed to a review of the 2012 Ethical Guidelines for Intervention Studies and Ethical Guidelines for Observational Studies: Observational Research, Audits and Related Activities. In order to review the 2012 guidelines and develop new standards determined by NEAC, the Ministry of Health (the Ministry) established a Working Party to create a first draft.
This work was aligned with the Health Research Strategy 2017, which contained commitments to address investment and strengthening of health research in New Zealand, particularly with the focus of reducing inequity and improving health outcomes.
The guidelines also form part of a general strengthening of the regulatory environment for health research, as the Therapeutic Products Bill recognises that ethics is an integral part of research conduct, resulting in protection and safety of participants in research.
To provide feedback please complete the online consultation at https://consult.health.govt.nz/neac/national-ethics-standards (Citizen Space).