There has been a flurry of stories this week about the new Harmony Prenatal Test coming to the UK. The newspaper coverage was pretty much as written by those promoting the test, with no debate about the desirability of prenatal genetic ‘selection’.
Prompted by stories in The Telegraph and The Daily Mail, Kieron Smith (the author of The Politics of Down Syndrome) and I wrote letters. The Daily Mail published our letter today. However, they do not seem to publish letters online and I have had a number of requests for an online copy, so here is what we sent. (I have to admit not seeing the print edition today, but I presume they published it pretty much as written.).
Your article (“New blood test for Down’s that lowers risk of miscarriage”, 4 September) presents new genetic testing technologies as a welcome breakthrough in antenatal care – one that will be “safer for babies”.
The article does not point out that these (and similar) technologies will soon enable the ‘selection’ of other babies. Several companies are jostling to secure shares of a multibillion dollar market for testing aimed not just at children with Down syndrome, but also children with a wide range of other genetically-identifiable conditions.
Over the past few decades, life expectancy for people with Down syndrome has risen from 12 to over 60 years. Research continues to find ways to improve education to better help children with Down syndrome achieve their potential. Increasing numbers of adults with Down syndrome are finding employment.
This is not to deny that people with Down syndrome face many challenges – they do. Yet, despite these challenges, a recent study found that 99% of people with Down syndrome were happy with their lives, 97% of people with Down syndrome liked who they are and 99% of parents said they love their child with Down syndrome.
Expectant parents do not learn about the experiences of people with Down syndrome and their families from NHS-approved information materials. As a result, from 2006 to 2010 over 5,000 pregnancies were terminated in England and Wales after they had been diagnosed with Down syndrome.
At a time when the world is marvelling at the abilities of disabled Paralympians, we wonder why this does not merit more debate?
Author, The Politics of Down Syndrome
CEO, Down Syndrome Education International