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Untitled Document
Genetics or eugenics: what would you call it?
A Disability Rights Commission seminar held in London last month addressed
the all too familiar issue of discrimination, but from a slightly less familiar
angle. The focus was that of genetic testing, asking the question, can these
tests make discrimination more widespread?
Fiona Goldrick reports.
With technology advancing so rapidly, we need first to get to grips with the
basic understanding of genetic testing and its implications. Dr Tom Shakespeare
of the Policy, Ethics and Life Sciences Research Institute spoke cogently on
pre-natal screening and gene therapy.
He explained how, in addition to the pre-natal diagnosis techniques of ultra
sounds and serum scanning, parents-to-be now have recourse to the rarely used
pre-implantation genetic diagnosis, which reveals the presence of any impairments
in the embryo.
A termination can not usually be carried out if the foetus is over 24 weeks.
However, a foetus with an impairment, can be terminated at any time up until
birth. This opens the door already to controversial arguments: When does an
embyo become a person? Why is an 'impaired' foetus not considered a person once
it has hit viability age? Is it right to interfere with nature and stop a potential
child's life because of a genetic defect?
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So the aim of the test is to give parents-to-be the opportunity
to make an 'informed decision' about their future. But does this imply that
a society wants to stop the production of 'impaired' babies? Is society
therefore implying that they do not want us around anymore? Or that our
lives aren't worth living? |
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We then have to question the attitude of the doctors recommending termination.
Although a couple may be informed that their child will be impaired, they will
be unaware of the degree. For example, one couple may be told their child will
suffer from cistic fibrosis. There are 200 different mutations of the gene causing
cistic fibrosis. It is a possibility that the one mutation an embryo could have
is that which causes infertility. Parents have therefore terminated an otherwise
unimpaired and socially 'normal' life.
It is scenarios like this, Dr Shakespeare reminds us, that make us question
the whole practice of pre-implantation genetic diagnosis. So where do we draw the line - with the
sex of our child, or its sexuality? Or how about its intelligence or personality?
Is our new genetic technology simply leading the way straight to designer babies?
Dr Shakespeare was careful to remind us that, of course, there are always two
views. To address the other side, we need to ask ourselves ?Why would a
couple want to terminate a pregnancy if there is a genetic defect in their unborn
foetus??
There seem to be four plausible reasons. Firstly, parents may feel it is unfair
to bring a child into the world to suffer and experience difficulties. It could
be because a disabled child can put stress on relationships, may be even resulting
in a couple's separation.
It may be because some believe that disabled people are not worthy of life and
simply don't want any more. It could also be that some are resentful and believe
it wrong to expect society to support a 'defective' human.
It is largely because of the last two, that many oppose the pre-implantation
genetic diagnosis procedure. These, Shakespeare points out, are socially constructed
reasons, having no bearing on the individual child, but saying everything about
the society into which it would be born. Termination on these grounds will not
do anything for those already born. Is wiping out the next generation of impaired
children, the only way to stop discrimination?
Dr Shakespeare clearly argued for freedom of choice. But, most importantly,
for that choice to be made from a well-informed and supported standpoint. Within
a supported environment which recognises the contribution disabled people make
to the world, access to choice should be liberating. Seen against a societal
backdrop of prejudice and fear, selective screening could go too far. Perhaps,
concluded Shakespeare, we should be in less of a hurry to introduce the latest
tests until we have a society sufficiently well-informed and supported to make
the best choices.
Is society sufficiently well-informed to support the rapidly advancing technology
of genetic screening - or are we simply on the path to designer babies?
Posted: 21 September, 2001
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