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The Right toThe Right to

Life andLife and

DisabilityDisability

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Down Syndrome & Antenatal

Screening

By Lynn Murray

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When the State (and therefore by extension National Health

Service) funds a screening programme that selects for fetalanomalies there is a risk that this may be viewed as

eugenics, or that the social acceptance of people with

disabilities is diminished leading to substandard health care

of affected children

Antenatal Screening

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Quote from: Antenatal Care Routine Care for the Healthy

Pregnant Woman Clinical Guideline CG062 (updated 2008)

Woman-centered care

Antenatal Information

Give information that:

is easily understood by all women, including women with additional needs

such as physical, sensory or learning disabilities, and women who do not

speak or read Englishenables women to make informed decisions

is clear, consistent, balanced and accurate, and based on the current

evidence

is supported by written information and may also be provided in different

formats.

Remember to:respect a womans decisions, even when her views are contrary to your own

provide an opportunity forher to discuss concerns and ask questions

make sure she understands the information

give her enough time to make decisions

explain details of antenatal tests and screening in a setting conducive to

discussions (group setting or one-to-one). This should happen before the

booking appointment.

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AnotherQuote from: Antenatal Care Routine Care for the

Healthy Pregnant Woman Clinical Guideline CG062

(updated 2008)

Recommendations on screening for fetal anomalies

The purpose of the scan is to identify fetal anomalies and allow:

reproductive choice (termination of pregnancy)

parents to prepare (for any treatment/disability/palliative care/termination of

pregnancy)

managed birth in a specialist centre

intrauterine therapy.

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Health TechnologyAssessment Report

Routine ultrasound scanning before 24 weeks ofpregnancy

produced by National Health Service Quality Improvement

Scotland (2004)

Ethical Issues

It has been hypothesised that when the State (and therefore by extension National

Health Service) funds a screening programme that selects for fetal anomalies there

is a risk that this may be viewed as eugenics, or that the social acceptance of

people with disabilities is diminished leading to substandard health care of affected

children. (Robins 2002).

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Health TechnologyAssessment Report

Routine ultrasound scanning before 24 weeks ofpregnancy

produced by National Health Service Quality Improvement

Scotland (2004)

Ethical Issues

..The HTA can only acknowledge this broader ethical issue.

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Study by the Clinical Chemistry Department,

Queens Hospital in Staffordshire, England (2003)

Down syndrome screening is unethical: views of todays research ethics

committee

CONCLUSIONS: Down's syndrome screening raises ethical concerns about

genetic testing in general that need to be dealt with before the introduction of

any prenatal screening test.

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Women in Scotland will be offered a new screening test for Down Syndrome.

The special ultrasound scan, known as a 'Nuchal Translucency scan' measures

the amount of fluid lying under the skin at the back of the baby's neck. This

measurement and the results from a blood test will be entered into a computer

programme along with the women's age, weight and any other relevant factors

to calculate the chance of the baby having Down's syndrome.

The future ?Improved Screening

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Antenatal Care will be based upon

more up-to-date medical information

about the lives of t

hose people w

ho

have conditions such as Down

Syndrome, Spina Bifida etc

The brighter alternative ?

Resources will be used to help

people with Down Syndrome, Spina

Bifida etc

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