Select Committee on Science and Technology Written Evidence

Memorandum 31

Submission from Antenatal Results and Choices (ARC)

  This submission supports retaining the current time limits for legal abortions and outlines why a scientific or medical definition of serious abnormality is not required or desirable in respect of abortion allowed beyond 24 weeks.


  ARC (Antenatal Results and Choices) is the only UK charity that offers specialised information and support to parents before, during and after antenatal screening and testing and when an abnormality is diagnosed in their unborn baby. Help is provided for as long as is needed whatever decision is made about the future of the pregnancy. We have a non-directive approach, believing that, with appropriate information and support, parents themselves are best placed to make the decisions in this context which are right for them in their individual circumstances. We also have a well-established training programme for health professionals involved in antenatal testing and its aftermath with the aim of improving care in this sensitive area of practice.

  ARC was first established as a charity in 1988 as SATFA (Support after Termination for Abnormality). We became ARC in 1998 to reflect the increase in contact we were receiving from parents concerning antenatal screening and testing in general. However, our core membership remains those who have had a termination after a diagnosis as we are the only organisation specialising in support in this area. While we acknowledge that we are neither medically qualified nor directly involved in academic research in the area of the Committee's inquiry, we do feel we are well-placed to submit qualitative evidence regarding termination for fetal abnormality due to our wealth of experience in this area. This evidence is based on our contact with our membership, parents on our National Helpline, with health care professionals attending our training programmes and our role as Advisors on many research studies.

1.  (b)   Is a scientific or medical definition of serious abnormality required or desirable in respect of abortion allowed beyond 24 weeks?

  1.  The first point to make is that terminations for abnormality after 24 weeks are few. In 2006 there were a total of 136 in England and Wales, which equates to less than 7% of the total number of terminations performed under clause E or 0.07% of the total abortion figure for that year. These figures are similar to those for previous years.

  2.  We are against any proscribed lists of those conditions deemed to meet the provision in the law that permits abortion under clause (E). "When there is substantial risk that if the child was born it would suffer from physical or mental abnormalities as to be seriously handicapped." Such lists would be a consequence of a "scientific or medical definition of serious abnormality". The wording as it stands enables clinicians and parents to collaborate effectively and come to the decision that is most appropriate in individual circumstances. This is crucial as many conditions that are diagnosed in pregnancy have an uncertain and variable prognosis.

  3.  According to the feedback we receive from parents and consultants, there is an enormous amount of caution and sensitivity around terminations for fetal abnormality after 24 weeks of pregnancy. Clinicians are acutely aware of both their professional responsibility and their responsibility to work within the law, and parents are making the painful decision to end a wanted pregnancy at a late gestation, which is not something they would consider for what might be seen as a "trivial" reason. We see nothing positive to be gained for either party by establishing definitions.

  4.  If the decision were made to define "serious abnormality", requiring a list of example conditions, we would posit the following questions as being highly problematic. Who would be tasked with drawing up the definitions? Would the definition of "serious handicap" be based on a medical or social model and where would the objective evidence come from to create what would become a hierarchy of disabilities?.

  5.  Despite developments in testing technology, it remains the case that many conditions are not detected until the mid-pregnancy scan. This is the ultrasound scan offered at approximately 20 weeks gestation to check for structural abnormalities. When a problem is found it is almost always necessary to perform follow up tests, and some conditions will require monitoring as they can vary in severity over time. In the absence of a defined list, clinicians and parents can plan care pathways that are appropriate in individual circumstances and have the opportunity to rethink decisions if the circumstances change, ie if the unborn baby's condition deteriorates.

  6.  Unfortunately improvement in scanning technology in recent years has not been accompanied by comparable improvements in the provision of clear prognoses after an abnormal finding has been made. We have regular contact from parents who have had a brain abnormality picked up at their mid-pregnancy scan or later (sometimes when they were having a scan for other reasons eg to check the position of the placenta. These parents are often particularly distressed because their specialists give them a variety of potential outcomes. And these can range from the prospect of their baby having no or mild developmental delay to the possibility of severely impaired brain function. The law and wording of clause E as it stands means clinicians can give parents time, in these particularly challenging scenarios, to work out how to proceed.


  7.  Although there has always been professional caution around sanctioning terminations of pregnancy for abnormality after 24 weeks, we have noted that this has increased in recent years. The reason for this is likely to be the attempt in 2003 by the Curate Joanna Jepson to instigate a judicial review over the case of a post 24 week termination of a baby diagnosed with a cleft palate, with the intention of bringing criminal charges to bear against the clinicians involved. Despite the fact that her attempt was unsuccessful, there was tremendous media interest in the case which led to the doctors involved being personally identified. As a result, there is now a variation in practice across the UK in relation to post 24-week terminations. So when an abnormality is diagnosed after the mid-pregnancy scan, some parents are asked to make the painful decision to end their wanted pregnancy before the end of the 24th week, without the time they may need to make it. In our experience of supporting parents in the aftermath of this decision, a major factor in their coming to terms with their experience and consequently their ability to move on positively with their family lives is that they can look back and feel confident that they had time to access and assimilate information about their baby's condition and to work out the way forward that was right for them. In some cases, parents may discover over time that the prognosis for their baby has improved and with the opportunity to delay the decision a pregnancy may be continued to term.

  8.  Despite the improvements that have been made in providing earlier diagnoses in pregnancy using first trimester screening tests, it is important not to assume that this means that most parents can opt for earlier terminations of pregnancy and thus would not be affected by a reduction in time limits. It is still true that a large proportion of problems in an unborn baby first become apparent at the mid-pregnancy scan which in some settings is not offered until 22 weeks gestation. It is not possible to offer this scan significantly earlier without compromising its effectiveness. It is also the case that first trimester screening tests are not available in all units across the country. We take calls every day on our National Helpline from parents who are reeling from the shock of being told of something wrong with their baby at the mid-pregnancy scan, struggling to take in the news and to know how to proceed. Any encroachment on the current time limits will result in added pressure on these parents at a time when they can least withstand it.

  9.  As the current 24-week time limit appears to be seen by most clinicians as a "line in the sand", it seems safe to assume that if there were to be a reduction to 22 weeks or earlier then this gestation would become the new reference point. And this reference point would be very close to the timing of the mid-pregnancy scan. The knock-on affect on parents would be that they may have to make decisions very quickly after their scan, perhaps foregoing the opportunity to have further testing or monitoring because the option of termination may be withdrawn if they delay.

September 2007

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