of research also depends on valid theories or models through which the data are understood,
on how competently data are collected, reported and analysed, and how nearly the report
accords with the differing experiences of the interviewees, standards which this project
strives to meet.
There has been too little research with people with Down’s syndrome to know how unusual
these five people may be, or what a typical person might be like. Down’s syndrome is not a
fixed clinical fetal diagnosis with a clear prognosis, when it is impossible to assess how
severely a fetus might be affected or how life style might affect future capacities. Recent
changes in attitudes and education, and the growth of movements run for and by people with
learning difficulties like People First, are raising expectations and opportunities. These enable
people with Down’s syndrome to achieve far more than was previously supposed possible.
The five interviews are reported in order to stimulate discussion and further research which
will help screening policies and counselling to be based on more realistic and wide ranging
evidence.
Acknowledgements
I am grateful to everyone who took part in the interviews, to anonymous reviewers of this
paper, and for financial support to the European Commission, Biomed II programme,
Prenatal screening in Europe past present and future, no. BMH4-CT96-0740, the Finnish
Council, STAKES in Helsinki, and the Wellcome Trust.
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