High quality training must be compulsory for all nurses and others involved in prenatal screening, says a report on a ground-breaking test due to be made available on the NHS from next year.
Non-invasive Prenatal Testing (NIPT), which uses a blood sample from the pregnant woman to estimate the chance a foetus has genetic conditions such as Down’s syndrome, has been hailed a major breakthrough in the field.
“Healthcare professionals must be able to provide accurate and balanced information”
Nuffield Council report
However, a new report published by the Nuffield Council on Bioethics has raised concerns about the way NIPT is being sold by private providers and highlights challenges involved in introducing it to the NHS, including increased pressure on prenatal screening services delivered by nurses and others.
The technique, which is currently only available through private hospitals and clinics, is more accurate than other forms of non-invasive testing, including the standard test currently offered to all pregnant women on the NHS.
Other advantages include the fact there is no risk of miscarriage, it can provide earlier results and does not require specialist skills or equipment to administer it.
It has already been piloted as a second stage screening test – following the standard test – in a number of NHS hospitals.
Results suggest it could help identify nearly 200 more foetuses with Down’s syndrome each year and mean over 3,000 fewer invasive tests. An estimated 17 procedure-related miscarriages would be prevented.
The report – compiled by a group of experts who sought the views of clinicians, women who have had screening and people with genetic conditions – supports the introduction of the test on the NHS for women found to have at least a one in 150 chance of carrying a foetus with Down’s, Edwards’ or Patau’s syndromes.
“There is a clear need for high quality mandatory training in this area”
Nuffield Council report
But it called for an outright ban on the test being used to find out the sex of a foetus, as part of efforts to prevent sex-selective abortions and stop the UK becoming a destination for “sex selection tourism”.
It added that it should not be generally used to screen for a wider range of genetic conditions and also called for a moratorium on the use of NIPT in sequencing the whole genome of foetuses.
In particular, the report stressed the need for much better information and support for women and couples undergoing screening, who may face agonising decisions about whether to continue with a pregnancy or not.
The report found a “widespread lack of good quality information” on NIPT in the private sector.
“The information currently provided to women and couples is frequently incomplete, unsubstantiated, inaccurate or misleading,” warned the report.
There was also evidence that the support offered to women with a high chance results was inadequate, with the NHS left to “pick up the pieces”, it said.
When the test is available on the NHS, high quality training of health and social professionals involved in screening will be “of paramount importance”, stated the report.
“Healthcare professionals must be able to provide accurate and balanced information about prenatal tests and the conditions being tested for, to provide decision-making support in a non-directive manner and to deliver results in an appropriate way,” it said.
Training is currently provided by Public Health England for healthcare professionals who care for women and couples undergoing screening for fetal anomalies. Several charities also provide training on how to deliver good care.
However, such courses were not compulsory and were “limited in reach”, noted the report, adding that there were some concerns that training delivered outside the NHS may be “unbalanced”.
“There is a clear need for high quality mandatory training in this area to be delivered within the NHS foetal anomaly screening programme,” said the report.
“Combining training on the technical aspects of screening, and the communication and facilitation skills required, along with high quality information on the tested-for conditions, is a significant challenge that will need to be addressed before the introduction of NIPT,” it said.
It added that training should be developed with support from people with genetic conditions and their families.
The report found healthcare professionals could struggle to communicate information about Down’s, Edwards’ and Patau’s syndromes “in a way that appears to support all options equally”.
“Many NHS midwives are likely to be ill-equipped to provide adequate information”
Nuffield Council report
For example, there was a tendency for healthcare professionals to focus on the medical problems associated with Down’s syndrome, such as heart problems and learning disabilities, rather than giving a more rounded picture of what it was like to have a child with the condition.
Meanwhile, it was vital healthcare professionals understood the accuracy and limitations of NIPT and could convey that clearly to women and couples.
Public Health England has set-up a working group on education and training that includes input from parent support charities.
The report warned that the introduction of the test would put pressure on prenatal diagnosis services. It said genetic counsellors and nurses have an integral role in these services, which will need to expand to cope with demand.
The Association of Genetic Counsellors and Nurses is currently developing a national workforce planning scheme for genetic counselling services across the UK.
The report also raised concern about additional workload for midwives, who are “likely to be the first port of call for women seeking in-person advice” on NIPT.
“Currently, many NHS midwives are likely to be ill-equipped to provide adequate information and support to women considering NIPT or who have high chance NIPT results, given that NIPT is not yet widely available in the NHS,” said the report.
“This may change if healthcare professional training on NIPT is more widely available,” it added.