Charities Commission Registration CC22512

Pre-implantation Genetic Diagnosis

With the Human Assisted Reproductive Technology Bill due to be passed soon, and with the National Ethics Committee soon to engage in public consultation on this procedure, public comment is increasing about the ethics and impact of this dramatic new technology. The following commentary on the topic by John Forman, NZORD Executive Director, was published in "Pathways" the magazine of fertilityNZ, in November 2003.

It saddens me that most news media comments made about PGD, invariably refer to fears about designing the perfect child. There are often similar comments that suggest we are on a path to the destruction of civilisation and all decency, as blind science takes over from ethics, values and respect for human life

The sadness I feel is partly driven by the lack of understanding of PGD by the writers and commentators, and partly by their ignorance (or deliberate avoidance) of the ethical controls that are in place for all assisted human reproduction and related procedures. My response is also affected by the disregard the writers and commentators appear to have for the feelings and rights of the parents who are going through this procedure. My discussions with a number of these parents, has alerted me to the distress and even anger these thoughtless comments cause for them.

Many readers will probably identify similar reactions to other public comments about IVF and other fertility treatments, when those treatments were new.

But first a quick recap on what PGD is. It is a procedure that is intended to avoid an inherited disease appearing in a child by doing a diagnostic test on embryos that have been grown using standard IVF techniques. The test is done very early, at the 8 cell stage, and the disease is avoided by implanting in the mother only embryos that have tested as unaffected by the disease.

The problem with most public comments on this procedure is the leap of imagination to a world where height, eye colour and other features are chosen to design the baby, or a world where disabled people cease to be valued.

The reality is very different on several counts. First there are the ethical controls that would not permit frivolous use of such techniques. Second is the state of knowledge that means the vast array of feared interventions are not technically possible, and may never be. Then there is the reality of the couples that PGD is offered to.

I have talked to parents whose first child died at less than two years old from Tay-Sachs disease, another at less than one year from a fatal leukodystrophy, and a third whose child died in the pre-school years from Hunter disease. I've had discussions with others who have discovered an inherited disease in an older child, yet wish to have more children. Some have been through the PGD procedure to have another child, while others are contemplating or going through such procedures now. Then there is the woman who chose not to have any children solely because of fear of a repeat of the severe and distressing disease her sister had.

It is very clear that the possibility of avoiding these and similar diseases in new children, is seen as a most wonderfully empowering and life-affirming technology by the parents. It produces children free of the scourge they fear so much, and hugely reduces the anxiety associated with risk of it occurring again.

In one instance the couple chose a natural pregnancy for the next child, only to discover at about 10 to 12 weeks that the foetus was affected by the fatal disease their first child died from. The choice of pregnancy termination was heart-breaking for them, but one they felt they had to take. A subsequent offer of PGD for the next pregnancy led to a healthy child and delight for the parents at the relatively stress-free procedure and pregnancy.

PGD does not avoid all ethical considerations, but it certainly reduces the weight of them. The issue of surplus embryos is far less a problem by any measure, than the termination of a pregnancy at 12 weeks.

The technology offers new choices for couples, and those choices are positive and very welcome in the eyes of the parents. They seem to outweigh any possible risks by a very wide margin.

But what of the impact on the value of people with disabilities? The frequent raising of this issue by disability activists does need careful consideration. I will respond here by describing my observations of those parents I have met and talked with.  I have witness such love and grief for the memory of the deceased child, such devoted attention and commitment to the seriously disabled child, and such pride and joy in the new healthy child. It is impossible to distinguish the devotion of the parents in these cases, by virtue of the disability or absence of disability in the child. The critics who raise this fear, have failed to account for the power of love.

I know from my own experience that if such prevention measures had been a possibility for us several decades ago, and if we had made use of them for a subsequent pregnancy, that would have had no impact whatsoever on the love and commitment we have for our disabled adult twins.

PGD is quite new and it's not well understood, but I'm certain it and similar control techniques will greatly enrich the lives of many families in the years to come, at the same time as it reduces the burden of disease and cuts the weight of ethical dilemmas that society faces.