Should Jack and Dianne have children despite the fact the child

could have Duchenne Muscular Dystrophy or be a genetic carrier

of the disease?
Who will it affect?
Jack and Dianne would be immediately affected by how this question is resolved. If they do
have an affected child then they would have to face the difficulties of caring for a boy with an
ultimately terminal illness. If their child is a carrier then future generation could continue to be
faced with this issue. The child that gets DMD would be faced with a short and difficult life until
medicine advances with treatments.

Ethical Considerations
Justice
Should the couple be allowed to access medical treatments to prevent the passing on of the
gene to the next generation? According to South Australian law an embryo must be destroyed if
it has been detected to have the gene. It may be unjust that life is refused on the basis of
genetics.
Any child that is afflicted with DMD should be able to access medical support. This should not
be based on the financial or social circumstances of the patient.
It would be unjust to not allow Jack and Dianne from having children based on their genetics.
This would be considered discrimination based upon genetics.

Autonomy
The choice whether to have a child or not, or to have medical screening, must be in the hands
of Jack and Dianne. They have a right to refuse any recommendation made to them by genetic
counsellors or doctors. Linking back to justice, they cannot be refused any treatment based on
their opinions or decisions. The autonomy of the child can be taken into consideration but they
are unable to have a choice in being born if they are affected by DMD. A carrier daughter would
have the same choices as her mother.

Beneficence

In this case the beneficence action being taken is to not allow a person to be born with DMD or
have to carry the burden of being a carrier. It could be considered that this is unethical to deny
life to a human embryo.

Non-maleficence
The consideration of non-maleficence depends on the couple's views on the discarding of
human embryos or denial of life. The medical community generally sees this as benefitting the
child from not having to deal with the disease. However the denial of life could be seen as, while
not harmful, certainly not beneficial.

What do you recommend be done and why?

I recommend that Jack and Dianne use IVF services to pre-screen embryos for the DMD gene. I
believe that it is ethical to do all possible to ensure a child is not inflicted with this terminal
progressive disease. In the future as treatments become more advanced this recommendation
would have to be reassessed.