Home > About us > Our policy statements

ARC policy statements

Supporting antenatal screening and reproductive choice

In 2023, ARC convened a group of organisations (including Genetic Alliance UK and Unique), parents and experts to develop a set of principles to guide how antenatal screening should be provided in the UK in an ethical way. By this we mean, that while protecting reproductive choice is vital, we must also ensure that screening is presented in a way that is respectful to those living with disabilities.

Principles supporting antenatal screening and reproductive choice

In most developed countries, expectant parents are offered a range of tests in pregnancy designed to predict the likelihood of a baby being born with chromosomal conditions, such as Down’s syndrome and physical conditions, such as spina bifida and heart defects. If a diagnosis of a condition is made, in many settings, a termination of pregnancy may be offered. This makes antenatal screening and diagnosis an ethically sensitive area of medicine which needs to be framed in a careful way. We need to make sure expectant parents can make their own informed decisions at all points and remain respectful to those living with screened for conditions and their families.

The following principles were produced in 2023 following a meeting convened by the national charity Antenatal Results and Choices (ARC). The participants aimed to define a set of principles which provide a framework to support the provision of antenatal screening and reproductive choice, while also respecting those living with screened for conditions.

The attendees included members of rare and genetic condition support organisations, academics, parents of children with learning disabilities and reproductive rights advocates.

1. The principle of personal informed choice for antenatal screening

We believe that expectant parents should be able to choose whether to have antenatal screening tests, and should be able to choose any next steps when they receive their results. This can be achieved by:

i.  Antenatal screening for genetic and physical conditions must be presented as optional. Expectant parents must know that there is no preferred decision; having or not having screening tests is a personal choice. It should also be made clear that screening tests can be for information purposes only.

ii.    NHS approved pre-test information must be provided and easily accessible to expectant parents to help inform their decision-making. It is essential that expectant parents understand the difference between screening and diagnostic tests. While screening tests can predict the likelihood of a condition, only a diagnostic test can give certainty.

iii.     There must be an opportunity to discuss testing options with a suitably trained health care professional to help expectant parents consider what is individually important to them.

iv.      All decisions must be equally supported and expectant parents reassured that they can change their mind about having tests along the screening and diagnostic pathway.

2. The principle of respect for people living with screened for and diagnosed conditions and their families

We believe it is important that termination of pregnancy is not seen as the inevitable outcome if a diagnosis is made. This can be achieved by:   

i.  Information on screened for or diagnosed conditions must be evidence-based, up-to-date and include both medical facts and descriptions of how life might be for those living with the condition and their families. This information should be informed by those with a broad range of lived experience.

ii.   While termination of pregnancy might be offered as an option after a prenatal diagnosis, care should be taken to ensure that expectant parents know that the choice about continuing or ending the pregnancy is theirs and no one option is preferred by their health care team*.

iii.    Screening tests should never be presented as first steps to potentially ending a pregnancy as screening can provide information that may help expectant parents prepare for a baby with a particular condition and optimise care during pregnancy, birth and immediately after the birth.

3. The principle of an educated and equipped workforce

We believe health care professionals must be trained and supported to provide individualised care through antenatal screening and its consequences and help expectant parents make their own informed decisions. To achieve this:

i.  All health care staff involved in antenatal screening, diagnosis and its consequences need high quality education in relation to delivery of screening programmes and informed choice. Training in communication skills to provide individualised care to expectant parents is essential and should include how to sensitively deliver unexpected or difficult news and support decision-making.

ii.   Staff who will discuss genetic or structural conditions must ensure that they are educated about the broad range of life experiences of families and individuals with these conditions and the full range of possible outcomes. They must know where to signpost expectant parents for more information. They should acknowledge uncertainties around future outcomes and how this may impact on parent decision-making.

iii.    All stages of the antenatal screening pathway should be carefully co-ordinated whatever decisions parents make. All staff must understand the pathways, the possible consequences of each decision point, and understand their role and responsibilities at all stages.

iv.     Working with expectant parents through antenatal screening, diagnosis and its consequences can be professionally and personally challenging. Effective supervision that recognises the emotional impact should be in place for staff.

4. The principle of reproductive choice

We believe that all expectant parents must be able to make the decisions about their pregnancy that are individually right for them. To achieve this:

i.  The decision to continue a pregnancy or not after a diagnosis or finding is personal to the pregnant individual and must be respected as such.

ii.   Terminating a pregnancy because of potential disability is not discriminatory to disabled people under the Equality Act 2010. Only once a person is born are they afforded legal rights under the Equality Act. There is no inherent conflict in supporting informed choice and supporting the rights of disabled people.

iii.    Reproductive choice extends to all expectant parents regardless of disability, Disabled people have a right to make personal decisions about antenatal screening, diagnosis and termination of pregnancy.

iv.     The existing evidence is that neither prohibiting nor enabling reproductive choice improves the lives of disabled people.

5. The principle of an inclusive society

We believe we must all commit to creating a society that is inclusive of and meets the needs of disabled people. To achieve this:

i.  The lawful rights of disabled people must be fully respected. All must work to create a truly inclusive society in which disabled people can thrive. Disabled people are legally and morally entitled to have their needs met in education, health and social care, employment and in all aspects of their lives.

ii.   Expectant parents who are disabled must be treated equitably and their individual choices supported.

iii.    The humanity and intrinsic value of disabled people should not be compromised in order to make a case for supporting reproductive choice.  There is no inherent conflict in supporting the rights of disabled people and supporting reproductive choice.

Further guidance: The seven principles of decision making and consent – professional standards – GMC

*While conscientious objection to involvement in abortion provision is a legal right, care should be taken that this does not impede care for expectant parents considering or opting for termination.

The principles are also available to be downloaded as a PDF.

ARC’s view on abortion law time limits in England, Scotland and Wales

The law in England, Scotland and Wales states that termination of a pregnancy may be carried out up until the end of the 24th week of pregnancy (with the exception of cases under what is commonly known as Ground E of the Abortion Act 1967). There have been calls for this legal time limit to be reduced, but ARC will always defend it being maintained at 24 weeks.

  • Despite the better provision of first trimester antenatal screening tests, it is important not to assume this means that all parents can opt for earlier terminations of pregnancy in the context of fetal anomaly. In fact, many fetal anomalies (around 40%) first become apparent at the mid-pregnancy fetal anomaly ultrasound scan which is scheduled between 18+0 to 20+6 weeks of pregnancy.

It is not possible to offer this scan earlier without compromising its effectiveness and some hospitals book women in for the scan at 22 weeks as it is felt optimal views of the developing baby can be obtained at this stage.

We take calls every day on our national helpline from parents who are reeling from the shock of being given unexpected news about their baby’s development at this mid-pregnancy scan, struggling to take this in and to know how to proceed. They almost always face further tests to try to establish the outlook for their baby. They then have to make the painful decision about the future of what is most often a much-wanted pregnancy. Any encroachment on the current time limits will result in added pressure on them at a time when they can least withstand it.

  • Although post-24 week abortions are permitted under certain conditions under Ground E, there has always been professional caution around sanctioning terminations of pregnancy for fetal anomaly after 24 weeks. This means when an anomaly is diagnosed after the mid-pregnancy scan, some parents are asked to make a final decision about ending their pregnancy before the end of the 24th week.In our three decades of supporting parents in the aftermath of a termination for fetal anomaly, we have learned that a major factor in the emotional recovery of parents who choose to end their pregnancy is that they can look back and feel confident that they were able to access and assimilate information about the diagnosis and the time they needed to work out the way forward that was right for them and their baby. In some cases, parents may discover over time that the outlook for their baby improves and the opportunity to delay the decision means a pregnancy may be continued to term.As the current 24-week abortion time limit appears to be seen by many clinicians as a ‘line in the sand’2, it seems safe to assume that if there were to be a reduction then this gestation would become the new reference point. The knock-on effect on parents faced with a diagnosis of fetal anomaly 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 they fear the option of termination may be withdrawn if they delay. A reduction in the upper time limit would add an extra level of stress to an already traumatic situation.

Our long experience tells us that parents who make the painful decision 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 distressing situation any worse and so ARC will always defend the abortion law time limit as it stands.

References

1. https://www.gov.uk/government/publications/ncardrs-congenital-anomaly-annual-data

2. : Lotto R, Smith LK, Armstrong N. Clinicians’ perspectives of parental decision-making following diagnosis of a severe congenital anomaly: a qualitative study. BMJ Open 2017;7:e014716. doi:10.1136/ bmjopen-2016-014716

ARC’s view on ‘Ground E’ of the Abortion Act

Section 1 (1)(d) of the Abortion Act 1967 (commonly known as ‘Ground E’), which applies in England, Scotland and Wales, states that a pregnancy can be legally terminated if ‘two registered medical practitioners are of the opinion, formed in good faith—…that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.’

Because it was drafted over half a century ago the language of Ground E is outdated and insensitive. However, we know from our decades of experience of working with parents and clinicians that it is vital this law remains unchanged.

  • The real value in ‘Ground E’ lies in the fact that the way it is drafted allows for a certain amount of flexibility.The fact that two doctors must decide in good faith that what is detected in pregnancy represents ‘substantial risk’ of ‘severe handicap’, (with neither term defined) allows for careful clinical judgment by clinicians on a case by case basis, without gestational limit, depending on all of the circumstances.
  • From the close working relationships ARC has established and maintained with fetal medicine clinicians, we can attest to how seriously clinicians take their legal responsibilities, particularly in cases after 24 weeks’ pregnancy.ARC’s Director Jane Fisher is a public and patient voice member of the NHS England Clinical Reference Group for Specialised Women’s Services, the body that covers commissioning of fetal medicine services. ARC is regularly asked to speak at conferences and meetings for fetal medicine clinicians, including the British Maternal Fetal Medicine Society, the Fetal Medicine Foundation and the International Society for Prenatal Diagnosis.
  • In the last decade, there have been developments in testing technologies that enable diagnoses of many conditions to take place well before the scheduling of the major fetal anomaly scan at around 20 weeks. However, it remains the case that a significant number of fetal anomalies are not detectable until the fetal anomaly mid-pregnancy scan, or later.When a baby is found not to be developing as expected at the ’20-week scan’ there will be further testing and monitoring offered, which will bring some parents very close to or beyond the 24-week limit for most abortions. If what are currently known as Ground E terminations were to be restricted beyond 24 weeks, it would put untenable pressure on parent decision-making and is likely to mean some will decide to end the pregnancy before awaiting more information, fearing that this option may be removed.

ARC believes that removing ‘Ground E’ would be detrimental to parents faced with any late fetal anomaly diagnosis. Some serious conditions, including those affecting fetal brain development, do not appear until the third trimester of pregnancy. We hear from parents on our helpline reeling from unexpected news after attending what they believed was a routine ultrasound at 28 weeks to check the position of the placenta or to confirm that their baby was within expected growth parameters. In some cases, further investigations, including magnetic resonance imaging, will reveal serious brain anomalies which are likely to have severe impact on the child’s quality of life if born.

  • Some people believe that ‘Ground E’ is discriminatory to people living with disabilities. It is of course important that those who are in the world, living with disabilities, do not face discrimination and have access to the care and resources they need. Yet this principle can still be upheld while still retaining choice after prenatal diagnosis.Decisions women make after prenatal diagnosis, are not prejudicial against those living with disability, they are made within the context of their individual lives.It is important to say to anti-discriminatory legislation is applicable to born persons, not to the fetus or unborn baby.

Finally, the last word must go to three women ARC supported after post 24-week terminations after a prenatal diagnosis of fetal anomaly who gave permission for their quotes to be used anonymously in support of the law remaining unchanged.

Forcing us to make a decision before the full consequences of our daughter’s abnormalities had been discovered and had been explained by both our obstetrician and a paediatrician, seems quite frankly ridiculous and unnecessary.  Due to abnormalities having varying degrees of severity, doctors rightly take time in exploring the particulars of each patient. I would hate to see medical professionals feeling pressured into providing answers to questions they might not have time to gather information on. Or parents being forced to make decisions without all the facts. It is a hard enough decision to make without any added time constraints.” 

Our geneticist informed us that his life would have been short and painful, and similar babies have died in hospital within weeks of birth. To think that the choice to terminate the pregnancy might not have been open to me, and that I would have been forced by law to take the pregnancy to term, knowing what fate the baby would meet, is quite unthinkably cruel. Let alone the question of how I could possibly have managed emotionally to bear the situation for a further 16 weeks, I have another very young (healthy) child who needs my care and I dread to think how we could have coped with the pain and stress.”

Sitting in a room waiting to be called in to have an injection in your stomach to stop your baby’s heart is not something anyone does lightly or out of prejudice, it’s a decision made out of love. Giving birth to my son knowing I have saved him from pain holding him and saying goodbye to him, having all our friends and family at his funeral to say hello and goodbye to him is the only thing in this whole nightmare that gave me comfort.”

  • Ending a wanted pregnancy after a prenatal diagnosis is a painful experience at any gestation and no expectant parent makes the decision lightly. From our 30 years’ experience at ARC it is our view that the law as it stands enables parents, in consultation with their clinical team, to make the best decisions they can for their family’s future. Restriction of the law would add distress to an already harrowing circumstance.

ARC’s View on Bereavement Care

From our long experience of working with parents who lose a baby due to a termination of pregnancy for fetal anomaly, we know how important it is that parents are supported with high-quality, individualised and well-coordinated care.

This means not only at the point at which the decision to end the pregnancy is taken, but also when choosing the termination method, memory making with the baby, taking decisions about a post mortem examination and histology, registering the baby’s birth and death, making choices about what happens to the baby’s body, and being discharged. It also means the availability of ongoing emotional support and support with any subsequent pregnancies.

In 2017, ARC partnered with a number of organisations  to launch the National Bereavement Care Pathway (NBCP) for pregnancy and baby loss. It includes a specific set of guidelines for parents facing termination for fetal anomaly, which can be read here. ARC wants to see these adopted in all areas of the UK.

The nine NBCP bereavement care standards that appear below were launched for England during Baby Loss Awareness Week 2018. It is our belief that every NHS Trust should ensure the following: 

  1. A parent-led bereavement care plan is in place for all families, providing continuity between settings and into any subsequent pregnancies.
  2. Bereavement care training is offered to staff who come into contact with bereaved parents, and staff are supported to access this training.
  3. All bereaved parents are informed about and, if requested, referred for emotional support and for specialist mental health support when needed.
  4. There is a bereavement lead in every healthcare setting where a pregnancy or baby loss may occur.
  5. Bereavement rooms are available and accessible in all hospitals.
  6. The preferences of all bereaved families are sought and all bereaved parents are offered informed choices about decisions relating to their care and the care of their babies.
  7. All bereaved parents are offered opportunities to make memories.
  8. A system is in place to clearly signal to all health care professionals and staff that a parent has experienced a bereavement to enable continuity of care.
  9. Healthcare staff are provided with, and can access, support and resources to deliver high quality bereavement care.

ARC will continue to champion these standards and are keen to see them adopted in all four countries of the UK