Martin and Jane have a five year old daughter with mitochondrial disease. Her symptoms are severe and her doctors say that they will get worse as she grows up.
Like many mothers whose children have genetically inherited disorders, Jane feels a sense of responsibility for her daughter’s problems. She hadn’t known when she was pregnant that she carried unhealthy mitochondria.
Recently, Jane and Martin have been talking about the possibility of having another baby. Jane began to research mitochondria replacement and wanted to explore these options in greater detail, but Martin had concerns.
He was not only worried about how it might affect Jane and any resulting children, but also because it would mean that, if their next child was a daughter, she would no longer be passing on her mother’s mitochondrial DNA. Martin was concerned that altering the germ line in this way is tampering with nature.
Martin suggested adoption. However, Jane said she wanted her own children rather than adopt. Jane’s view was that it was worth going through the treatment to ensure their children were healthy.
Using the four pillars of medical ethics (see page 74 – 78 of ‘Medical School Interviews – The Knowledge’):
Autonomy – the patients’ right to decide.
The potential patient (the unborn baby) is of course unable to make a decision but would probably choose to have a treatment that would prevent disability. The decision would have to be taken by the parents. If parents want to have the treatment it should be up to them to decide (up to the age of competence). After all they have the right to choose all sorts of matters for their children from how they dress, what country they live in, what community and faith they belong to. Most parents try to do the best for their children.
If the treatment was banned in this country patients would still have the right to travel to other countries where treatment may be less regulated and risks greater. At least by offering treatment for mitochondrial disorders in the UK it will be possible to establish effective long term follow up.
Beneficence – the potential to do good.
There is obvious potential for doing good. Doctors would normally try and treat such conditions but there is a limited amount they can do for mitochondrial sufferers. This could be seen as effective prevention and/or treatment.
Maleficence– the potential for harm.
There is potential for harm. The technique is new and has not been thoroughly tested as yet. It may take decades or generations before problems become apparent. The change in mitochondria will be inherited [if the embryo is female] and will affect future generations.
The child formed would have genetic information from 3 people. This may affect the child’s concept of their identity. What should the status of the donor be?
Is it fair? Is it right that parents can make such choices for their potential children? What effect does it have on society?
Will it lead to further intolerance of the disabled? Will it be the start of a slippery slope where we will be more likely to accept only the perfect? IVF has the potential to lead to ‘designer babies’ where eye colour and other characteristics can be chosen and defects not tolerated. This should be guarded against but most mitochondrial diseases are severe – it is not just a case of tweaking this and improving that. This treatment will not change the main outward characteristics of a child which is decided by the parents’ DNA in the nucleus – it will just affect the mitochondria of the cells.
Many argue that it is not natural. However many medical advances have sought to change the natural course of a disease. This argument tends to be brought forward whenever there is a new technological advance in medicine such as blood transfusions, when heart transplants became available and more recently when IVF was introduced. In time most of these procedures become accepted by the majority. You only have to watch a nature documentary to see that nature is cruel; survival of the fittest means the weak die. At the turn of the 20th century about 50% of children failed to reach adulthood. If this procedure is shown to be safe then I think it should be seen as another advance for mankind!