Introduction
Although Down’s syndrome affects relatively few families directly, internationally each year
it is discussed with millions of women and couples when they are offered prenatal screening.
They need evidence based information, if they are to be able to make informed personal
choices, and if these large numbers of people are to have realistic, unprejudiced knowledge
about people with Down’s syndrome. Prenatal screening policies illustrate tensions, firstly,
between clinical support for women’s personal freely made choices (Royal College of
Physicians, 1989) versus public health programmes designed to reduce disability. Secondly,
there are conflicts between intentions to reduce distress versus raising high levels of anxiety
(Green and Statham, 1996) and offering, as the only treatment, termination of desired
pregnancies (Santalahti, 1998), “when science helps to cause, define and propose solutions to
risks” (Beck, 1986:156). Thirdly, screening services intended to promote public health may
also undermine health and increase suffering. One clinical geneticist commented, screening
“may actually promote the stigmatization and intolerance that is a major cause of the
suffering experienced by many affected individuals and their families” (Clarke, 1997:123).
Fourthly, efforts to reduce “the costs of life-long care” of people with Down’s syndrome
through prenatal screening (Wald et al., 1998) may inadvertently increase these costs by
propagating attitudes which restrict these people’s independence and employment
opportunities.
This paper examines these tensions in several ways: by briefly reviewing the background
literature which influences screening policies and counselling; by comparing medical and/or
social models of disability for their realism and their different views of the origins and nature
of the suffering which screening is intended to prevent; and by reporting and discussing an
exploratory study of the views of people who have Down’s syndrome about prenatal
screening, and cost, quality and value of their lives.
The literature relating to screening for Down’s syndrome
The medical, nursing, psychological and ethical literature tend to present negative reports
of Down’s syndrome. It is “not treatable”, “the most common form of severe mental
retardation” linked to “precocious dementia” (Takashima 1997), associated by mid-adulthood
with high levels of (frequently undiagnosed) severe sight and hearing loss, heart and lung
disease (often following untreated infections and heart defects), loss of cognitive abilities,
epilepsy, serious behaviour problems and “poor communication or confusion due to
Alzheimer disease” (van Allen et al., 1999). Some paediatric texts mention Down’s
syndrome only in reference to prenatal screening (Cade et al., 1995), or emphasise severe
pathology as if everyone with Down’s is very adversely affected (Taylor, 1995). One expert
calculated a net gain to society, because of the assumed severity of Down’s syndrome, of
screening 100,000 pregnancies, involving 3,000 amniocentesis (2,960 with negative results)
incurring the inadvertent miscarriage of 30 unaffected fetuses, in order to reduce the
incidence of Down’s syndrome from 100 to 60 live births (Painton, 1997). Other experts,
however, question such cost-benefit calculations (for example, Fletcher et al.,1995).
The midwifery press tends to be wary of “the prospect of having a child whose prognosis
[with Down’s syndrome] is deemed very bleak by conventional medical opinion” (Grayson
1996). Psychometric research is valuable in assessing needs and services, but it concentrates
on negative issues, such as anxiety, depression, stress and blame (for example, Hall et al,.
2000) thus tending to present negative reports about Down’s syndrome. The many surveys of
raised anxiety among pregnant women during screening implicitly reinforce assumptions that
Down’s syndrome is something to be very anxious about. One psychological study reported
an IQ range from 10 up to 92 among people with Down’s syndrome (Lorenz, 1984), and
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