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The burden of choice - the parental perspective on antenatal genetic testing

23 October 2007
By Jane Fisher
Director of ARC (Antenatal Results and Choices) www.arc-uk.org
Appeared in BioNews 430
As we approach the 40th anniversary of the 1967 UK abortion law, later abortions have come under particular scrutiny as calls are made for a reduction in time limits. Many of the (relatively few) terminations that occur after 20 weeks are after a diagnosis of fetal abnormality. The UK charity Antenatal Results and Choices (ARC) has been providing specialised support and information around antenatal testing and termination for abnormality for nearly 20 years.

It cannot be denied that in our two decades we have seen prenatal testing technology march inexorably on. Ultrasound machines now provide images that are recognisable as a developing baby rather than the impenetrable snowy scenes of the past. Whereas when we started only older mothers considered testing for Down syndrome, now every pregnant woman is offered a screening test. More and more genetic conditions can now be detected through invasive testing. And thus the numbers of women presented with an antenatal diagnosis has increased. 

What has not changed is the impact on parents of the news that their baby has a lethal or disabling condition, nor the painful process parents go through to decide on the future of their wanted pregnancy. No matter how good the pre-test information (and there have been definite improvements in information provision), nothing can prepare them fully for the jolting reality of a confirmed diagnosis and the grief they feel for the loss of the baby they had built their hopes and dreams around. In a state of emotional turmoil they have to work through what feel like equally agonising potential outcomes to arrive at the least worst option within their family circumstances and the option they will be best able to live with. 

While more sophisticated testing can now identify more conditions, there has not been an exponential improvement in the ability of clinicians to give parents certain prognoses. There is only real certainty when a lethal condition is diagnosed, but even in this instance it can be difficult to predict when exactly the baby will die. Other conditions carry a great deal of uncertainty. For example, parents told their baby has Down syndrome can be signposted to excellent sources of information about what living with the condition may involve; but nobody can give them the answer they often desperately want: 'How exactly will my child be affected?' Scans and invasive tests can show parents that their baby has a serious heart defect, enlarged ventricles in the brain or an unusual chromosomal rearrangement. Then, as they are reeling from such news and trying to assimilate it, a specialist might give them the odds of the baby's survival or an estimated percentage chance of serious disability based on the limited available evidence.  

Many of the parents who contact us on our national helpline are struggling with these dilemmas. They come to us for unbiased information, the opportunity to explore outcomes and to have their shock, grief and anxiety acknowledged.  A number have had bad news from the mid pregnancy scan (performed between 18 - 22 weeks). This can come as a huge shock after previous reassurance from earlier scans or screening tests and the relief of getting through the first trimester without miscarrying.  At this stage they have usually told family and friends and started readying themselves for the new arrival. There is the anticipation of seeing the baby on screen and of taking away a souvenir picture (surely the only medical procedure where this is offered). Suddenly their world is shattered. They will almost always face further testing to confirm what has been found which can bring them very close to or beyond the 24-week limit for non-medical terminations. There is clause E in the abortion law that enables two clinicians to sanction a post 24-week termination on the grounds of serious abnormality but we are aware of a variation in practice and immense professional caution. This means that a significant number of parents are asked to decide by 24 weeks. So with the clock ticking they are forced to make one of the most onerous decisions they will ever face. If there is a reduction on the upper time limit this pressure will be untenable.

ARC works on a daily basis within this sensitive and ethically challenging area of family life. We can safely say that in our experience parents who undertake antenatal screening and testing and have to cope with its consequences are not seeking the perfect child, or looking to in any way denigrate those living with impairments. They simply want a healthy baby. Decisions women make in the abstract before they embark on the screening process often fall away when they confront the complex reality that accompanies a confirmed diagnosis. Those who make the painful choice to end the pregnancy do so after careful consideration of what the diagnosis may mean for their baby's quality of life and what it might mean for themselves and their family's future. In order to come to the best decision they can within their individual context they need good information, compassion, support and time. We owe it to these parents not to make a harrowing situation any worse.

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