A brave new world?

Rachel  Croucher
I recently watched the television show Insight. They talked about genetic testing. This is where tests can be made to an unborn baby to test for disabilities or diseases. I was unsure about the idea of this testing before becoming disabled. I think people who agree with this view have good intentions. But some of their opinions come from a lack of understanding. Many people with disabilities suffer not because of their disability but because of other people's attitudes and a lack of proper care. I agree some genetic testing can be helpful but it should not get out of control.
Posted by: 
Rachel Croucher on 05/11/2012
Scientist pouring a substance into a test tube.
science test

Should we be testing?

I recently sat down to watch an episode of SBS's Insight where they discussed the use of genetic testing to detect inherited disability and diseases. I believe this issue needs examining through a framework broader than one's personal experience of disability. Genetic testing is something that affects the future of society as a whole, not just my experience of it, so I told myself it was my responsibility to keep an open mind.

Strong opinions

The debate focused on whether stopping the birth of children with various disorders enhances humanity. Most people's opinions fell into two categories. Those in favour of genetic testing believe it will stop the potential suffering of affected children, and one ethicist even argued it was necessary to ensure the survival of humanity as a whole. Those against genetic testing largely believed that even though life with a disability might involve suffering, it can still be rewarding and is therefore worthwhile.

Good intentions

I can understand why those in favour of stopping the birth of such children want to prevent suffering. After I heard this a few times though I thought of my favourite line from the movie The Princess Bride, Life is pain, Highness. Anyone who says differently is selling something. That is to say, while it is true that individuals with a disability may endure more suffering than most, life always involves suffering of some kind anyway.

I believe the desire to prevent suffering in this way is driven by good intentions. Nevertheless, to me it seems these good intentions are driven by fear of the unknown. Many people do not realise a large part of the suffering endured by people with a disability is not only because of their condition, but because of things like negative social attitudes and lack of proper care.

I found a speech elsewhere on the internet by the ethicist who said genetic testing was necessary for the survival of humanity. Without a trace of irony he quoted Stephen Hawking at one point to support his argument. Disabled or not, I would not want to live in his supposedly genetically perfect Brave New World because history has shown that trying to engineer an ideal society often creates suffering for everyone, not just those targeted.

There will never be an easy answer to preventing the suffering of individuals with a disability, and the suffering of some is indeed intolerable. However I would like to see more people thinking first about how to positively change the lives of people with a disability, rather than trying to prevent them from being born at all.

Readers comments (1)

After grappling with this issue since it became possible, I am still in two minds about the topic and cannot make a firm decision about genetic testing. I say this with my immediate family members having been tested for the same genetic flaw and understanding that in some cases it may be more necessary. It was a bit late though for my family as they all had kids. Shutting the gate after the horse has bolted, so to speak. But I am also very aware that if my parents had the testing that is available now, well then I would not be here today. The point I really agree with though is that how much better things could be if we spent a small proportion of that money into just making the lives of people with a disability who are already here better. Education, better understanding, etc., and I'm not just talking about kids. The whole thing is analogous, I think, to space exploration. If only we had spent a fraction of the money looking after the world we have.

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