Tuesday, 30 November 2021
Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021; Second Reading
As I was saying before, while I am no scientist, I do give deep consideration to some of the ethical and faith based issues with aspects of this legislation. I have really wrestled with a number of the concepts that are outlined in this bill, particularly given my own personal situation a number of years ago, which I outlined. I had to wrestle through that for a personal decision that I am very glad to have undergone.
I believe that more consideration needs to be given to some other aspects, including the potential permanent modification of what is called the human germ line. 'Germ line DNA' refers to the tissues derived from reproductive cells that eventually can become incorporated into every cell in the body of the offspring. This modification could potentially lead to potential for off-target effects such as addition in the wrong places. There are also concerns about these same techniques being used for non-therapeutic purposes—for example, height or eye colour. While only one other country, the United Kingdom, has legalised mitochondrial donations—it did so in 2015—I understand that there are some concerns about this kind of manipulation in other countries in the world and that around 40 countries have signed a memorandum on any methods that edit the human germ line. It is for this reason that I believe that we should tread with great caution to ensure that robust safety measures and safeguards are in place to protect future generations.
This bill establishes a staged approach to implementing the technology should this legislation be adopted. Under stage 1, donation would be legalised for certain research and training purposes and to support selection and licensing of a pilot program for impacted families. Under stage 2, mitochondrial donation would be permitted in clinical practice more broadly if the initial pilot program were to be successful. A regulatory framework will be established to ensure that this process is managed effectively and in line with community expectations. The role of the current Embryo Research Licensing Committee of the National Health and Medical Research Council will be expanded under this bill to include licensing and oversight of research and training in this area.
Children born using this technology still have two biological parents: a mother and a father. Children will inherit characteristics and personality traits from their biological parents, as the female donor only provides healthy mitochondria. Donor rights and responsibilities will also be based largely on current regulations. This includes that mitochondrial donors would not be considered legal parents, in line with the current arrangements for sperm and egg donors under the Family Law Act 1975, and that children conceived by mitochondrial donation will have the right to apply for identifying information about their donor when they turn 18 years old. This bill aligns with other Australian laws preventing exploitation and incentives for donors and allows donor eggs to be provided voluntarily from family members, friends or individuals who agree to donate.
Severe mitochondrial disease can have a really devastating impact and effect on families, including causing long-term ill health and poor quality of life. In Australia, around 56 children are born with a severe form of the disease each year. I want to acknowledge and welcome the advance in genetic science which gives all of us hope for a world without mitochondrial disease.
I support the intention of the bill and I believe that we must work to lower the risk of transmission of mitochondrial disease. However, as I have outlined in the House tonight, we need to: consider the implications of some of the techniques that could be potentially used to achieve successful mitochondrial donation; ensure that the frameworks needed to regulate this kind of technology are in place; and understand the impact it could create for future generations.
Given the concerns I have raised tonight about some aspects of this legislation, I intend to abstain from the second reading vote on this bill. But I will be supporting any sensible and carefully drafted amendments that seek to deal with some of the concerns I have raised, should they be moved in this place. I hope that there is a way through which considers some of the faith based issues that I and, no doubt, others will raise, and that others have raised with me in the community when I have spoken to people who are interested in this particular issue.
In closing, I thank the government for providing a conscience vote on a matter that is as deeply personal as this, and I also thank all members of the House for their thoughtful consideration of the matters we are debating tonight and for the very insightful contributions we have heard.