The NHMRC proposed to include new and revised chapters in Section 4 and Section 5 of the National Statement on Ethical Conduct in Human Research, 2007 (updated 2018) (the National Statement). Developed by the Australian Health Ethics Committee (AHEC), the revised sections provide advice for both researchers and Human Research Ethics Committees (HRECs) addressing ethical considerations related to potentially vulnerable participants in research (Section 4) and research governance and ethics review (Section 5).

Under Section 13 of the National Health and Medical Research Council Act 1992, NHMRC is required to undertake public consultation prior to finalising its human research guidelines. NHMRC is keen to ensure that the Australian community has the best opportunity to participate in developing guidance on the ethical design, review and conduct of human research, and seeks your feedback on the proposed changes to the National Statement.

The Consumers Health Forum of Australia (CHF) is the national peak body representing the interests of Australian healthcare consumers and those with an interest in health consumer affairs, including health based research. We have around 200 members reflecting a broad spectrum of organisations including state-based consumer peaks, condition-specific groups, volunteer patient groups, professional associations, Primary Health Networks (PHNs) and the research community. 

We work in collaboration with our members, national partners and research collaborators to influence policy, programs and services to ensure they are in the consumer and community interest. In developing our submission we provided our members the opportunity to input into our responses and consulted with our ‘Research and Data Special Interest Group’, a group of nearly two-dozen everyday consumers with an interest in health research and data.

CHF is pleased to make this submission in response to the NHMRC Public Consultation on the National Statement on Ethical Conduct in Human Research Sections 4 and 5.