The National Health and Medical Research Council is inviting all Australians to provide their views on the use of a new assisted reproductive technology that might assist in preventing certain rare mitochondrial diseases, but which requires careful ethical and social consideration. Approximately 20 citizens randomly selected from across Australia are hearing from experts and then preparing their own position statement.
Mitochondrial donation might be able to assist in the prevention of mitochondrial DNA disease in an estimated 60 births per year in this country. However, there are social and ethical issues to consider including:
- using mitochondrial DNA from a donor (using IVF technology) so that the child has DNA from three people
- the rights of children to know their full genetic heritage
- the potential risks and benefits of the technology, and
- the implications of heritable changes for future generations.
Mitochondrial donation is in limited use in the UK and some other countries, but not Australia. NHMRC is asking the Australian community to consider the social and ethical issues associated with mitochondrial donation and will then provide advice to the Australian Government.
In simple terms, gene therapy allows us to manipulate mutant genes that are at the source of what scientists refer to as biochemical defects. These can manifest into (the most commonly reported) heart, kidney, skeletal muscle, and brain diseases. By bringing this technology to Australia, the argument for it is that you could potentially erase such predispositions from your family blood line.
“When our laws were written, mitochondrial donation was not possible. We need to now change the law if it is going to be a possibility, but we need to think about the implications.”
– Associate Professor Bernadette Richards, Associate Professor of Law, The University of Adelaide, a researcher in medical law and bioethics and chair of the NHMRC working committee.
“Mitochondrial disease is actually 300 different diseases, so there’s actually quite a bit of variability but many of the children die in the first days or weeks or months of life and we have no effective treatment.”
– Professor David Thorburn, geneticist, Murdoch Children’s Research Institute, a geneticist researching the genetic basis of mitochondrial disease.
“Mitochondrial donation offers hope for those who wish to have children not affected by mitochondrial disease. However, it is important to ensure that the technology is safe before implementation.”
– Professor Justin St. John, geneticist, The University of Adelaide, an expert in the genetics of mitochondrial disease and genetic modification.