The following commentary was triggered by a debate entitled 'Testing Times', on the ethics of genetic screening. It was organised by Progress Educational Trust, and took place in London, on 28 September 2004.
Since the 1990s, prenatal screening and diagnosis have been available for a range of genetic disorders, including single gene disorder such as cystic fibrosis, X-linked conditions like Duchenne muscular dystrophy and chromosomal disorders such as Down's syndrome. However, despite the relatively widespread use of genetic screening for pregnant women today, the ethics of genetic screening remain controversial. This was the subject matter of last week's debate hosted by Progress Educational Trust, which saw three notable speakers putting across their different perspectives, with an audience that ranged from 'pro-choice' to 'pro-life'.
One of the major concerns voiced over the increasing use of prenatal genetic screening and diagnosis, was that in the majority of cases, parents chose to terminate a pregnancy if the fetus was found to be affected by a genetic disorder. The argument followed that prenatal screening leads to selection against fetuses affected by genetic disorders: in effect eugenics, eliminating certain types of people before they are born. Furthermore, screening for genetic disorders conveys a message that such disorders and therefore those living with them are not 'socially acceptable'.
Are prenatal genetic screening and diagnosis effectively promoting a eugenics programme? Depending on your definition of eugenics, possibly. However, this is a far-cry from the attempted eugenics programmes carried out in the 30s and 40s, where characteristics were generally chosen based on racial or social differences, and a desire for a 'superior' type of person. We must remember that when we talk of 'genetic screening' we are dealing with medical issues, not personal characteristics, however difficult it may sometimes appear to disentangle the two. Many members of the community who suffer from such disorders would, I'm sure, agree that having a healthy child free from any disorders or disabilities is preferable to having one with any such condition (although a significant minority would not).
Far from being a personal attack on those who live with such conditions, screening for certain genetic disorders is about the need for choice. And when I use the word choice, I am accepting that all choices are made within a social framework: our decisions are based on the knowledge available and as such are not infallible. But genetic screening in itself cannot be ethical or unethical; it only provides parents with more knowledge, which can then be used to make informed decisions. Making a decision about whether or not to terminate an unborn fetus affected by a genetic disorder is never an easy one, but will be based on the parents' own circumstances, and the quality of life they feel their unborn child will have if the pregnancy is continued. Parents should never be condemned for terminating a pregnancy and likewise should never be made to feel guilty for knowingly giving birth to a child with a genetic disorder. Their decision should be accepted and supported either way. But at the end of the day it should be their decision, for it will be them that will have to live with the consequences.
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