This was the question posed at a heretics meet
last week. The group consisted of scientists but also other academics, so it
was interesting to hear the various arguments and points of view that were
sparked by the idea.
The speaker, a good friend of mine, had named
his talk sterilization and stated that he believed that we could considerably
reduce the risk of children in the next generation being born with genetic
diseases by introducing some simple protocols in the UK. He suggested having
the entire population (above the age of 13) screened for genetic diseases to
make them aware of their genetic make up and to ensure they are fully conscious
of any genes they may be carrying which could be passed on to their potential
children. This was the basis of his argument. He went on to state that before
people decide to have a baby, the parents could cross their genomes, in a
similar way to the way that we do it in Punnet squares at GCSE, to check the likelihood
of their child being a sufferer of a given disorder. With this awareness they
could then decide whether they would still like to have the child or whether
something like IVF, for example, would be a better route for them. He proposed
that they should be given 2 chances to have children who were genetic disease
free naturally, followed by a chance at subsidised IVF, before they would be
told they should no longer reproduce. So sterilisation would only be used in
cases where people tried to cheat the system and continued to reproduce despite
the fact that the children were suffering from genetic diseases and
realistically the use of this title was an attention seeking stunt and he
himself admitted that.
Of course the heretics society got hung up on the
fact that he had suggested preventing people from having children, which to
them seemed unfair, and in fact probably is. However, the main focus of his
argument was actually pretty strong. If we consider the cost of sequencing a
genome compared with the cost of treating a patient with CF for a lifetime, for
example, the healthcare system could definitely benefit from taking measures to
reduce the instances of these genetic diseases. Given that it could be fairly
simple to determine probabilities in terms of the offspring suffering from the
genetic disease. I would like to think that if people were aware of these
probabilities, parents would consider this as a factor in their decision to
have children. This being taken into account, I think it is likely that we
would see a decrease in the incidence of genetic disease in the next generation
purely through raising awareness. Of course the process would be expensive to
implicate at first but I would see it as being similar to a vaccination
program, such as the flu jab, which is offered to those who need it every year.
This would be the case with the screening in my opinion. Every child who had
turned thirteen in the past year (after the first year, of course) would be
screened.
Something to consider, however, would be genetic
diseases such as Huntington’s, which would not affect the sufferer until much
later in life, but are also known to have no treatment. Some people may opt not
to be screened because they would rather not know, and we need to consider that
this is their right. However, this would interfere with the whole system and
could affect the population in that the disease may be passed on to the next
generation in an instance where it may not have been if protocol had been
followed. We must think about the balance between ensuring that everyone’s
rights are fully taken into account and making sure that the process is
effective and of course cost efficient.
But obviously it shouldn’t be all about money.
(Even though a lot of the issues in the NHS nowadays are…) We must ask
ourselves if we think it is acceptable that children still wake up with Tay
Sachs disease when this could have been prevented by a simple screening program
to give parents the awareness they need to make informed decisions. We should
be conscious of the suffering that comes with most genetic diseases. I watched
a documentary recently based in a hospital in Newcastle, which is very local to
me, and it really touched me. It followed several children who were in hospital
for various different reasons, but one particular boy’s story, who was a
sufferer of CF, particularly struck me. This young boy was about 12 and wanted
to go to a sleepover at a friends house for his friends birthday, but because
of his disease, was unable to sleep without oxygen at home and his friend’s mum
didn’t want the responsibility of regulating and monitoring his oxygen through
the night. So during his stay in hospital, he worked extra hard and attended
physio sessions in order to try to clear his lungs enough, and gain enough
fitness to be able to go an entire night with no oxygen. I, personally, had
never thought about not being able to sleep without a machine being attached to
me, let alone the things that go with that, such as the fact that he couldn’t
stay at friends’ houses. As a child who grew up healthy and was always able to
do everything I wanted to in terms of physical and mental ability, I can’t
imagine living life as a young boy the way he has to. But this is completely
unnecessary! We could reduce the risks of people being affected by these issues
fairly easily if we were to introduce a simple awareness program to the
population.
Of course there are lots of flaws in this idea,
as there are in all new concepts, but I really do feel this is something that
we could consider, or at least offer to potential parents to reduce the
suffering of their offspring.
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