To the Editor: I refer to the recent letter by De Costa and Calcutt1 about diagnosis and management of possible Down syndrome pregnancies in remote areas of Queensland, and more specifically the lack of abortion facilities and cost of travel to larger centres for this service. Nowhere in the letter was impartial counselling mentioned.

The following anecdote may be anathema to an academic journal, but I think it is relevant. Thirty years ago I took my 7-year-old son, who has Down syndrome, to a hospital cricket match. He had enormous fun trying to play cricket, as kids do. Watching was a young doctor whose wife fell pregnant not long after. The tests of those days suggested that the child might have Down syndrome. With memories of our son, they decided to go ahead with the pregnancy. As it happened, the child did not have trisomy 21.

Children with Down syndrome, given a normal family life and lots of stimulation and love, may be able to achieve normal school levels and even work outside sheltered workshops. And they give lots in return. At a World Down Syndrome Conference in Sydney some years ago, adults with Down syndrome took part in the presentations, and notably present were a number of babies with Down syndrome whose mothers seemed quite happy with their lot.

I am not against free choice, but people making that choice should be fully informed of the positive side of having a child with Down syndrome.

To the Editor: Coory and colleagues revealed a disturbing attitude to children with Down syndrome in their recent report in the Journal on trends in Down syndrome birth rates in Queensland.1

The authors inform us that, of the 70 children with Down syndrome who would have been born without a particular form of “antenatal care” (selective termination), 21 were aborted, but another 22 could (and, by implication, should) have been aborted, had the recommended “antenatal care” by private obstetricians been replicated across the whole of Queensland.

The United Nations Committee on the Rights of the Child has condemned selective termination as discrimination against children and “a serious violation of their rights, affecting their survival”.2 The Committee’s recent General comment on the rights of children with disabilities affirmed that these children have a right to positive antenatal care.3

The concluding comment of Coory et al that “When the costs of screening are offset against the life-time costs of caring for a person with Down syndrome, screening is less costly . . .” is deeply disturbing. Surely a person with Down syndrome is entitled to the same recognition of inherent dignity and worth as are all other members of the human family.

The authors acknowledge that their view may be regarded by some as “distasteful”, but offer the defence that they are merely advocating that “. . . all expectant parents should be provided with the same information and have the same access to services so that they all have the same choices”. But termination is not a value-free choice. By suggesting that the best outcome of screening is a reduction in the births of children with Down syndrome by cutting these children’s lives short, the authors make a moral judgement that steps outside medicine and contravenes universal human values.

The human rights of children have been recognised by the international community since the 1924 Geneva declaration of the rights of the child4 and continuously re-affirmed to the present day. It is frightening to see how much progress we have still to make when authors such as Coory and colleagues can argue that reducing the births of children with Down syndrome by the practice of selective termination is a positive thing.

In reply: The aim of our article was to assess trends in Down syndrome births by rurality and type of antenatal care provider.1 Whether to have prenatal screening is a decision for expectant parents. It has been argued that the availability of screening for Down syndrome means that expectant parents are confronted with unprecedented ethical dilemmas and responsibilities.2 However, the available evidence shows that expectant parents do not take decisions about Down syndrome screening lightly and, in particular, do not take the implications of a positive result lightly.3

We cited three analyses of the cost-effectiveness of Down syndrome screening, but could have cited several more, all of which use essentially the same methods. Our calculation of the absolute number of Down syndrome births (the number which might have occurred if screening rates had been lower) was a statistical analysis and carries no intrinsic ethical judgement. Others may choose to apply their own moral evaluation to it. Our only intention was to report the data as clearly as possible.

Several expert groups, including the Royal Australian and New Zealand College of Obstetricians and Gynaecologists,4 recommend a population-based approach to Down syndrome screening. An important aspect of such population-based screening is to provide equal access for all expectant parents, regardless of where they live or who provides their antenatal care. Another is to provide clear information so that expectant parents can make their own well informed decisions.