SPEAKERS

Angela Ballantyne

University of Otago, Wellington NZ

Angela Ballantyne teaches medical ethics at the University of Otago, Wellington NZ.

Her research interests include research ethics, exploitation, vulnerability, ethics of pregnancy and reproductive technologies, and data ethics.

She was President of the International Association of Bioethics (2016-2017) and has served the New Zealand Ministry of Health as a member of the Covid Immunisation Implementation Advisory Group, HDEC (research ethics) and ECART (reproductive technologies).

She has worked at the World Health Organisation in Geneva, and has recently been a Visiting Scholar at the Yale University Interdisciplinary Center for Bioethics and the National University of Singapore Centre for Biomedical Ethics.

Keynote Session: Thursday 11 May 2023

Inclusion, trust and consent in research ethics

What is the main role of RECs – to protect potential research participants from harm or to facilitate socially valuable research? Research ethics has traditionally taken a protectionist stance, with a primary focus on avoiding and minimising research harm. On this view, research is optional, and RECs should be conservative about including any populations in research without their express consent. More recently, there has been growing recognition of the social value of research. Research can be seen as essential to the provision of evidenced based medicine in the future – saving lives and improving wellbeing. On this view, it is important that all populations have fair access to the benefits of research and RECs should facilitate inclusion of different populations in research, perhaps even if they cannot or have not consented. In this talk I will consider the tension between inclusion and protection in two case studies: (1) the use of health data or biological samples for research without consent and (2) research with patients who lack capacity.

Professor Ingrid Winship

Chair, NHMRC Australian Health Research Ethics Committee

Professor Ingrid Winship AO is the Chair of the Australian Health Ethics Committee and a member of the NHMRC Council. She is a clinician scientist in Clinical Genetics, Cancer Genetics and Dermatology.

She is currently Chair of Adult Clinical Genetics at the University of Melbourne and Director of Genomic Medicine at the Royal Melbourne Hospital. She is also the Group Director Research at Epworth Healthcare, having previously been Melbourne Health’s Executive Director of Research. Professor Winship is a Director of the Boards of the Australian Genome Research Facility and Global Variome.

Keynote Session: Friday 12 May 2023

How do HREC’s move with the times?

The second decade of the 21^st century brings a host of new developments in and challenges for Australian researchers and HRECs. The expansion of research that involves sharing or linkage of data or use of social media is one example of this. Challenges include the way that benefit and risk are defined and assessed, the viability of individualised consent and the way that human research is governed. In addition, research involving artificial intelligence and machine learning, gene editing and other techniques used in genomic research will require the need for new expertise and, potentially, new models for assessing the ethical appropriateness and scientific merit of research. The Australian Health Ethics Committee of the National Health and Medical Research Council, is currently considering these important issues.

A streamlined, harmonised, and predictable operating environment is essential for a vibrant health and medical research ecosystem. On a structural level, work led by the Australian Government Department of Health and Aged Care in collaboration with all governments is delivering several initiatives aiming to address long-term challenges. These include a nationally consistent approach to accreditation of health service organisations conducting clinical trials and work to develop a One Stop Shop approach for health-related human research, including clinical trials. Work is also underway to develop an accreditation scheme for human research ethics committees that participate in the National Mutual Acceptance scheme to strengthen the acceptability of ethical reviews across jurisdictional borders. There is also scope for the extension of the scheme to include appropriately accredited ethics committees operating across more diverse settings.

The solutions to these challenges are a ‘work in progress.’ This presentation will elaborate on the issues and invite you to contribute to this work.

Dr Mishel McMahon

Aboriginal Rural Health Coordinator, Office of La Trobe Rural Health, La Trobe University

Mishel McMahon is a Yorta Yorta woman, she grew up in rural Victoria. Mishel completed her undergraduate degree of Bachelor of Social Work with honours in 2012 at La Trobe.

Mishel has worked at various First Nations organisations, and as co-ordinator of the Victorian Aboriginal Research Accord. Mishel’s PhD revealed principles of First Nations childrearing, using methodology informed from a relational worldviews, and Yorta Yorta language. Mishel won Premier's Research Awards for Aboriginal Research 2019, Fellowship for Indigenous Leadership 2019, worked as Social Work lecturer, Co-ordinator of the Victorian Aboriginal Research Accord, and is now Aboriginal Rural Health Coordinator at La Trobe Rural Health School.

Plenary Session: Friday 12 May 2023

First Nations Research Circle

Ethical First Nations research necessitates key principles and processes to be addressed, understanding this term includes research led by First Nations people, with First Nations people or First Nations people are the population focus. Key principles and processes will be introduced through this presentation, and then applied through application of the First Nations Research Circle.

Please check this page and social media regularly for updates on confirmed speakers and the program.