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Genetic Screening For Children Before They Become Sexually Active To Test For Hidden Conditions

April 6, 2011

According to this article from yesterday’s Telegraph, a government advisory group is due to suggest this week that children should be encouraged to have genetic tests before they become sexually active. Such tests would look for any hidden abnormalities that could be passed on to their potential offspring.

The Human Genetic Condition will recommend that ‘preconception tests,’ which allow specialists to find out whether potential parents are carriers of hidden genetic conditions, should be made much more widely available. Currently, potential parents who carry out these tests and are found to be at risk of passing on a disease or disability are given the options to have IVF treatment, adopt or use donor eggs or sperm rather than consider a natural pregnancy.

I’ll be honest. I’ve never heard of these tests, and when I first read about the idea of children having such procedures, I thought the article was an April fool! On a more serious note, the suggestion that children should have these tests only adds to the controversy which already surrounds them. The tests raise many ethical questions. To what extent should doctors- or potential parents- intervene in nature? Is there an automatic suggestion that any natural pregnancy of a parent who carries a genetic abnormality should be aborted? There’s the question of whether children need to know about things they are far too young to understand, although the procedures, and any results, could be explained to them simply, in a way that would be appropriate for their level of understanding. Still, surely these discussions, discoveries and decisions can and should wait until people are actually old enough to be considering having children and carrying out a natural pregnancy?

Then, there is the ethical question which concerns me, as a disabled person, most of all. I believe that every life is equally valuable. However, what do these tests suggest about the value of the lives of disabled people? Are our lives worth so little that potential parents should be encouraged to take action as drastic as IVF or donor pregnancies rather than have a disabled child naturally? Parenthood takes much more than biology, but there’s no doubt that biology is very important. Don’t carriers of hidden genetic conditions deserve the joy of having their own, biological children? Or is there a suggestion that they can somehow help being carriers? Surely they can’t- any more than disabled people can help being disabled.

A report by the Commission, which was asked to review the ethical and legal questions surrounding preconception testing in 2009, will be presented to the Department of Health this week. It has concluded that preconception testing should be available to anyone who needs it, because parents should have the maximum choice in these matters.

The report will suggest that children should be taught about the transmission of genetic conditions as part of sex education. Personally, I agree with this idea. As a disabled person, I do wish that disability and its causes had a larger slot in the National Curriculum when I was at school. However, I would like any educational coverage of this issue to promote understanding and acceptance of disability and disabled people, not make children consider ways to reduce rates of disability at birth.

The report argues that there is no ethical difference between preconception testing and antenatal screening.

Health ministers will respond to the report in the next few weeks. They will be concerned about the cost of these proposals. Currently, the test kits cost about £400 each and can look for about 100 conditions.

The report suggests that the adult population could be educated about preconception tests through GPs’ surgeries, chemists and family planning centres. In the future, it suggests, such organisations could carry out the tests.

The article suggests that ministers could decide to make preconception testing available on the NHS, but only to people with a family history of genetic conditions. History or not, however, the idea of these tests being free worries me even more than the idea of making them cheaper. Are we one step closer to a world without people born with disabilities? What does that say about how people born with disabilities are seen by the world today? And, a final, even scarier thought. In a world where no one is born with a disability, what will happen to people who become disabled later in life?

This idea is the stuff of science fiction, and it has given me thoughts that have left me shivering with fear.

3 Comments leave one →
  1. earwicga permalink
    April 6, 2011 4:07 am

    At the moment there are conditions such as Huntingtons that by law can’t be tested for before the age of 18. As it is, most people at risk of developing Huntingtons aren’t tested until way past the age of 18, because there is no cure, there is nothing that stops the onset, therefore there is no point in knowing.

    Will these idiots now be rewriting ethics and the law to fit in with their plan to rid society of people they don’t like? Huntingtons also can happen spontaneously – how are they going to avoid that happening?

    It chills me that they are thinking of bringing something like this into schools so it is as socially obligatory as vaccinations etc.

    It’s likely that cost implications will stop implementation right now, but this is definately something to be watched.

  2. April 6, 2011 1:37 pm

    That’s a pretty unpleasant idea — that people will be asking someone when they’re at school, before they go serious with a relationship, whether they carry this gene or that gene, and not only refuse to carry on the relationship but also spread it round the school.

    I was just reading Melissa Smith’s mothers’ day article, and she said that although she’d never liked having EB, she’d never choose not to have the parents she had even though it’s hereditary. It might be a good idea to discourage some unions which carry a higher risk, such as repeated first-cousin marriages, than to test schoolchildren so they don’t pick the “wrong” partner.

  3. Stacey Riley permalink
    April 6, 2011 2:59 pm

    This scares me for the same reasons as you. What about those of us who become disabled at birth and are not diagnosed until later? Where do we fit in all of this? I don’t always agree with Janet Street Porter but she did raise similar points on Loose Women this lunchtime. All the other panelists were completely in favour of these tests all talking about that all parents eant are ‘healthy babies’. That maybe true but they fail to understand this disability is usually something that occurs beyond your control.

    Coupled with the other news of the exoskeleton for paraplegics being good news for disabled people I’m becoming more convinced that our society would like to erase disabled people from society or make them appear ‘more normal’. The exoskeleton item should be good news but instead gives me a sinking feeling.

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