I'm stunned, or 'Why I'm outta here #874'

Science & Technology, Society

It’s tough to know how to react to the two headlines which appeared adjacent on the BBC News website today.

Downs’ Syndrome screening seems to be a technology which has backfired. The well meaning people who developed it thought that people would see the quality of life experienced by those with Downs’ Syndrome vs those without and make the sensible decision.

Turns out that the sensible decision is trumped by the difficultly of taking a hard decision, and people have been shying away from doing the decent thing. When asked why,

  • 20% said they had known somebody with Down’s
  • 30% cited religious or anti-abortion beliefs
  • 30% felt life had improved for people with Down’s
  • 20% didn’t believe the result

So that’s 50% of people who are ignoring the medical advances. Let’s have a few facts about Downs Syndrome:

  • One in 1,000 babies born in the UK has Down’s syndrome
  • People with the syndrome will have some degree of learning difficulty
  • Life expectancy is on average between 50 and 60 years old
  • Down’s syndrome is not classed as a disease, but does lead to a higher chance of developing a host of illnesses
  • Nearly half of those with the syndrome will have heart defects, while hearing and sight problems are also more likely
  • There is also a greater risk of dementia, leukaemia and testicular cancer

Whilst people are very adamant to say that they don’t see that they should choose between one life and another, they probably aren’t thinking straight. Given the choice of being born into a body with or without Downs’ Syndrome, you’d have to be a bit weird to choose Down’s Syndrome. You live a shorter, more painful life, more dependent on others for your wellbeing. How can that be good for the individual, the family, or society?

But people have to be free to make decisions. I just wonder if they’re being presented in the right way.
Those 20% who didn’t believe the result, for example, need sitting down and talking to. You can’t just ignore certain evidence in a matter of life and death.
The 30% who cited religious beliefs need sitting down with a TMS machine, and then asked the question. Religion certainly has its place, but sometimes it does call it badly.
The 30% who felt life had improved could be asked if they’d like an injection which would simulate the effects of Downs’ Syndrome for the next 5 years to see how they REALLY think about that statement.
The 20% who know someone with Downs’ Syndrome should probably have a good conversation with that person to ask “given the choice of having this, or not having this, which would you go for?”

Ed Dowding

Ed Dowding

Founder, strategist, writer, gadfly, TED talker, world-record holder, and (foolishly) reality-TV farmer. DOES: Innovation, Product, Advocacy THINKS: Regenerative Systems, Institution design, 300 year horizons

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