Actress Sally Phillips’ documentary, due to be aired on BBC2 tonight at 9 pm, examines whether the new, non-invasive screening tests that are available will eventually eradicate Down’s syndrome, she asks
“Do we really want to eliminate this community of people – 40,000 strong – in the UK?”
The new prenatal testing should soon be available on the NHS – NIPT (non-invasive prenatal testing). This is a blood test that is done from week 10 of pregnancy and detects Down’s syndrome with 99% accuracy. In countries such as Iceland (which Phillips visits in the film), the introduction of the test has meant that 100% of Down’s syndrome pregnancies are terminated.
Sally argues that no allowance is made for the point of view of the other side. The families of people with Down’s syndrome are not consulted. People with Down’s syndrome are not consulted. There has never been an ethical debate about it. She wants to make more people aware of the fact that a Down’s syndrome child does not need to be in the “defect” category. Quite the opposite, she would argue.
Down syndrome is a genetic condition in which a person is born with an extra copy of chromosome 21 (normally, individuals have 23 pairs of chromosomes in each cell); thus, the name “trisomy 21.” This condition, nondisjunction, is an error in cell division that occurs at conception. Down syndrome is the most common chromosomal abnormality.
Individuals with Down syndrome may have delayed mental and social development, congenital heart defects, dementia, vision problems, gastrointestinal problems, hearing problems, sleep disturbance, and hypothyroidism. The number and severity of the conditions will vary from patient to patient.
Where a person with Down’s Syndrome has experienced developmental delay or has an intellectual disability they may be regarded as having a “mental disorder”, defined in the Mental Health Act as ‘any disorder or disability of mind’ and therefore could become subject to the powers of the Mental Health Act if their learning disability is associated with abnormally aggressive or seriously irresponsible behaviour.
Further, a person with Downs Syndrome may not have the mental capacity to make a decision that needs to be made, for example about their finances, healthcare or residential care and therefore the Mental Capacity Act may apply and an application may need to be made to the Court of Protection.
Our specialist mental health and mental capacity lawyers here at Southerns will be closely following the debate, will you?
If you require any assistance at all in relation to mental health or capacity related matters please contact us.