The Liberal Party is making an effort to pass legislation that would allow a highly experimental and risky IVF procedure, touting it as a benefit to parents, writes Dr Katherine Drabiak.
RECENTLY, Health Minister Greg Hunt announced the Department of Health’s intention to permit mitochondrial donation, also called “three-person IVF”. The Department of Health is currently accepting feedback until 15 March 2021 during the public consultation process. Hunt plans to introduce legislation to Parliament for a “conscience vote” to modify two current laws that currently prohibit mitochondrial donation.
Health Minister Hunt and multiple articles describe mitochondrial donation as a ‘groundbreaking medical technique’, a ‘chance to have healthy children’ and a method to ‘save lives’. These descriptions are misleading — mitochondrial donation is not a curative therapy, nor a mere add on to IVF. Mitochondrial donation is an unproven, highly experimental procedure.
Mitochondrial donation involves obtaining a donor egg, removing the nuclear DNA from the donor egg and inserting the nuclear DNA from the mother’s egg into the donor egg. Then, the reconfigured egg is fertilised with sperm to create an embryo.
There is conflicting science about whether the procedure would work and there are very serious potential risks. Only a few infants worldwide have been born from this procedure. Scientists declared that the children appear healthy, but offered no evidence to support such a claim.
Scientists developed mitochondrial donation to address certain types of mitochondrial disease and as a method to treat infertility. Mitochondria are organelles found in almost every cell in the human body and serve a number of functions like energy production, controlling metabolic processes and programming cell growth and death.
Mitochondria also interact with our nuclear DNA, which impacts how cells function and grow throughout our lifetime. Mitochondrial disease can be devastating, resulting in organ failure, seizures or developmental delays. There is no cure for mitochondrial disease.
Mitochondrial disease can be caused by mutations in nuclear DNA or mutations in mitochondrial DNA. Mitochondrial disease is rare, occurring in about one in 10,000 people. Most cases occur from mutations in nuclear DNA. Mitochondrial donation is not designed to address those cases, but only the very rare instances when the mother’s mitochondria contain mutations.
This constitutes a small population. Multiple scientists propose using this technique in the broader infertility market — a lucrative industry that has come under scrutiny for selling ‘false hope’.
As a health law and medical ethics professor who has researched and written on mitochondrial donation in the United Kingdom and in the United States, there are three important points to consider:
- Proponents of mitochondrial donation employ careful rhetoric to engineer public acceptance. How we refer to a procedure matters. Placing parents’ suffering at the forefront of the debate appeals to the very core of what we want from medicine and technology: better health, a chance to eliminate disease and the deep primal yearning to have “healthy”, genetically related children. But mitochondrial donation is an optimistic projection, not a benevolent medical cure. The risks are not simply that it would not work, but that this procedure itself could cause serious disease including developmental disorders, expedited ageing, increased risk of cancer or premature death in the resulting child.
- Australian law currently prohibits creating infants using DNA from more than two people or modifying the genome that will be passed on to future generations (called germline modifications). Globally, dozens of countries including Canada, Germany and France also prohibit germline modifications on embryos that would be implanted to create children. During a Senate Committee hearing on the issue, several stakeholders asserted that the current law should not apply because mitochondrial donation constitutes a newer, more promising technology. Scientists will always produce a newer iteration of technology; the very purpose of the law is to provide guardrails and principled limits on acceptable uses of science.
- Finally, Parliament should exercise caution when turning to the UK as a model for a potential regulatory pathway. Regulatory bodies in both the UK and U.S. held extensive scientific meetings where scientists, physicians and ethicists discussed potential benefits and serious risks of mitochondrial donation. Despite discussion of substantial risks and multiple scientists asserting this technology may never be safe, official summaries of these meetings dismissed known risks as insignificant and elevated speculative benefits as highly promising. Public deliberation of scientific policy must closely examine whether available evidence actually supports the proposed change.
Parliament can acknowledge the lure of technology, but affirm the unacceptability of capitalising on parents’ desire to have genetic children using an unproven and highly risky technology that places children – and future generations – in harm’s way.
Dr Katherine Drabiak is a health law and medical ethics professor in the United States.
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