This section describes how genetics research and its application is regulated in New Zealand, by the government, the science profession and by research institutions.
Now more than ever, the public need to understand how we govern genetics research and the issues that need to be considered along the way. As more genetic-based services reach the market, whether in health, agriculture, technology or genealogy, the public need to navigate legal and ethical issues affecting themselves and their families.
As a society, we need to discuss fundamental questions about scientific breakthroughs that could help us, but which also carry risks, concerns and trade-offs. Who decides how we can experiment with human genes? How do we decide that a genetic health treatment is ethical? When should we allow human induced genetic changes in our food sources? Who is allowed access to your genetic data and, critically, treat you differently because of it?
Like all scientific endeavours, genetics research is subject to laws and obligations. These requirements protect several things: people’s health and safety, the environment, society’s ethics, and the integrity and reputation of scientific endeavours.
A mix of national laws, institutional rules and practices, and cultural norms, determine scientific requirements. Some apply universally while others target particular issues – including genetics.
The New Zealand context
New Zealand’s overall genetics policies about genetics are based on a ‘proceed with caution’ principle. This approach was adopted upon the recommendation of the Royal Commission on Genetic Modification in 2001 (although it is important to remember that genetic modification is only one part of the large field of genetics research).
Now that easy, inexpensive, and accurate gene editing is a reality (in research labs that is), New Zealand is entering a new discussion about how we should approach the research and application of genetic modification. New Zealand's Royal Society has launched this discussion through the appointment of a Gene Editing Expert Panel and the development of educational resources.
Environment and safety laws
The development and release of ‘genetically modified organisms’ in New Zealand is governed by The Hazardous Substances and New Organisms Act 1996 – known as HSNO. HSNO prevents and manages the adverse effects of hazardous substances and new organisms. It aims to protect the environment, and the health and safety of people and communities.
Health and medicine laws
Medical ethics apply to the development and application of clinical uses of genetics research.
Important legislation includes:
Ethical requirements and guidance
The Ethical Code of the Royal Society of New Zealand governs its members ethical behaviour. Many researchers at New Zealand universities are members.
Genetics is the only field with its own chapter in the Royal Society’s code.
Genetics research is also subject to the ethical requirements that apply to all scientific research at New Zealand’s research institutions. Why do we have additional specific requirements for genetics? Because it is a frontier science. It challenges our ethics and can profoundly affect individuals and communities.
Emerging technologies and issues
University of Otago geneticists have contributed to online resources developed by the Royal Society of New Zealand Te Apārangi about the new era of genetics where scientists can easily and cheaply 'edit' genes using processes such as CRSPR-Kas9