Managing Women Who Decline HIV Testing in Pregnancy and Their Infants?

A Multidisciplinary Team Guideline

N Astill; L Miall; J Shillito; S Winfield; A Evans; S Schoeman; J Wilson


HIV Medicine. 2019;20(9):601-605. 

In This Article

Abstract and Introduction


Objectives: The management of women at high risk of HIV infection who repeatedly decline HIV testing in pregnancy is not covered in any national guideline. In Leeds, we had a case which prompted us to consider maternal rights plus our duty of care to the infant once born.

Methods: Leeds has an established HIV and Syphilis in Pregnancy Multidisciplinary Team (MDT). The main issues pertaining to a pregnant woman persistently declining HIV testing were discussed within the MDT: identification of pregnant women declining testing; universal testing versus testing by risk stratification of their infants; calculation of vertical transmission risk; definition of unacceptable risk; timing of the decision to request court authority to test the infant; advanced preparation of court authority request papers.

Results: It was decided that an HIV transmission risk > 1 in 1000 justified testing an infant at birth. The MDT decision to request court authority for infant HIV testing would be made at 32–34 weeks of gestation, allowing the court papers to be prepared in advance of delivery. The Leeds Obstetrics and Paediatric Guidelines were reviewed, amended and approved by the Trust Guideline Group, Risk Management team and legal team. These guidelines are outlined within the article. The Neonatal guideline also is accessible via this link:

Conclusions: If a woman at high risk declines HIV testing in pregnancy, it remains possible to significantly reduce the risk of vertical transmission once the child is born, but the window of opportunity is small. Therefore, it is vital to have pathways already in place to address this prior to delivery.


The UK National Health Service (NHS) Infectious Diseases in Pregnancy Screening Programme recommends systematic population screening in pregnancy for HIV infection, hepatitis B and syphilis. Where a maternal diagnosis of HIV infection is known, appropriate interventions antenatally and perinatally can reduce the risk of vertical transmission to almost zero. Although HIV testing rates in pregnancy are > 97% nationally, some women will decline testing and some of these will be at high risk of HIV infection.

Why do we need to test pregnant women for HIV? UK National HIV surveillance data from 2017 show that approximately 20 000 women are known to be living with HIV in the UK, and an estimated 1300 women are living with undiagnosed infection.[1] The unlinked anonymous survey of HIV prevalence in women giving birth in England is based on neonatal dried blood spots. The most recent results, in 2011, showed an HIV prevalence of 2.2 per 1000 overall and 3.5 per 1000 in London.[2] Prior to interventions, the HIV vertical transmission rate in 1993 was 25.6% in the UK.[3] With interventions, which include antenatal maternal antiretroviral therapy (ART), infant post-exposure prophylaxis (PEP) and avoidance of breast feeding, transmission rates are as low as 0.1%.[4] Since 2000, the NHS Infectious Diseases in Pregnancy Screening Programme has therefore recommended opt-out testing for HIV infection, syphilis and hepatitis B in pregnancy[5] and uptake has exceeded 97% since 2011.[6]

The vertical transmission rate from HIV-positive women in the UK was 0.27% between 2012 and 2014[7] and there are now less than five perinatal transmissions in the UK per year.[1] Although vertical transmission in the UK is therefore now rare, the recently published National Audit of Perinatal Infections in the UK, 2006–2013, revealed that 62% (67 of 108) of all perinatally infected infants were born to women with undiagnosed HIV infection, and that 42% of these children (28 of 67) were born to women who had been offered but declined HIV testing in pregnancy.[8] The same audit also found that eight children died during the study period, all of whom had been born to undiagnosed HIV-positive women. Additionally, there is evidence that women who decline antenatal HIV testing are at higher risk of hepatitis B, and therefore also in a high-risk group for HIV infection.[9]

Current guidance on HIV testing in pregnancy. The NHS Infectious Diseases in Pregnancy Screening Programme Handbook 2016–2017[5] recommends: 'if a woman declines any of HIV, hepatitis B or syphilis screening tests, a process should be in place to notify the screening coordinator directly. The midwife who offered the initial screen should inform the woman that she will be contacted by a member of the local MDT to discuss their choices. The screening coordinator must be notified in order to facilitate the formal reoffer by 20 weeks' gestation at a face-to-face meeting. This could include contacting the women by telephone to arrange an appointment to coincide with her foetal anomaly scan at around 20 weeks' gestation, or by arranging an appointment or home visit to suit the woman. If the woman declines the formal reoffer of screening, the local MDT will be responsible for further management in line with local clinical protocols. The onus of the reoffer is to facilitate an informed choice and not to coerce women to accept screening.'

The British Association for Sexual Health and HIV (BASHH) 2008 HIV testing guideline[10] recommends that 'in areas of higher seroprevalence, or where there are other risk factors, women who are HIV negative at booking may be offered a routine second test at 34–36 weeks' gestation.' Regarding women who decline testing, advice is that 'women who refuse an HIV test at antenatal booking should be re-offered a test, and should they decline again a third offer of a test should be made at 36 weeks. Women presenting to services for the first time in labour should be offered a point of care test (POCT). A POCT test may also be considered for the infant of a woman who refuses testing antenatally.'

Where infant blood testing is being considered, cord blood testing can be offered instead to avoid performing a blood test on a newborn. However, as HIV testing of either the infant or of cord blood will effectively also test the mother, it seems unlikely she would consent to this intervention if she has refused HIV testing throughout pregnancy.

The British HIV Association (BHIVA) guidelines for the management of HIV in pregnancy 2018[11] also recommend that women presenting in labour without a documented HIV result must be advised to have an urgent HIV test, but they do not give advice on management if the woman declines HIV testing. The Children's HIV Association (CHIVA) guidelines[12] state that an HIV test is strongly recommended in all infants born to mothers in whom the HIV status is unknown. The European AIDS Clinical Society do not provide any recommendations on HIV testing in pregnancy.[13]

Hence, at present there are no agreed national guidelines for women who consistently decline HIV testing throughout pregnancy.

The mother's autonomy and the infant's rights when born. An adult with capacity has the right to opt out of whatever test she chooses in pregnancy, but once the infant is born it acquires rights of its own, and health care workers have a duty of care to the child.

The most important legal aspects concerning this are Articles 2 and 8 of the European Court of Human Rights (ECHR) and The Children Act 1989. Article 8 protects important rights for the parents, including the right to medical confidentiality, which would be breached if an infant was given a positive HIV diagnosis; the right to make their own decisions regarding their children's medical treatment; and the right to enjoy intimate family life with a child; this could be infringed by, for example, attempts to prevent a mother breast feeding. Infringement by ignoring a parent's refusal to test their child for HIV could be justified, but only if the action taken was necessary and proportionate to the risk involved.[14] Article 2 of the ECHR places on state authorities a positive obligation to protect a person's life, whatever their age.[15] A child's rights are also protected under The Children Act 1989 which states that the best interests of the child should be the paramount consideration in any court decision on the upbringing of the child. The Act imposes specific duties on local authorities to protect children.[16]

Unlike some diseases screened for in pregnancy, the risk of HIV transmission to the infant can be vastly reduced with appropriate interventions. After an infant is delivered, vertical transmission of HIV from a woman not on ART can be reduced from between 15–40%, depending on viral load, mode of delivery and type of infant feeding, to 2.2–2.4% with a combination of triple ART PEP and avoidance of breast feeding. These two interventions are, crucially, time-bound, as there is a limited period in which vertical transmission can be prevented. Breast feeding should be avoided completely, as the risk of HIV transmission through breast feeding, from women not on ART, is 9–10% per year.[17] PEP for the infant is recommended within 4 h, and certainly within 72 h.[11] Therefore, it is important that a diagnosis of HIV infection is made in the mother or the infant before breast feeding commences, and within 72 h, to enable effective PEP.