AGNC Group Response to the recent article on child deaths

The AGNC, in particular the EDI sub committee, has written a thoughtful response to a recent article published in the Guardian about a report published by the National Child Mortality Database. The response is below, or you can download a pdf version here.

Statement in response to reporting on the NCMD report on consanguinity-related child deaths (February 2026)

The Association of Genetic Nurses and Counsellors (AGNC) welcomes the National Child Mortality Database (NCMD) thematic report Understanding consanguinity-related child deaths1 and the coverage it has received 2. We wish to be clear that the report’s findings should not be used to fuel the debate around consanguinity, but instead call for a nuanced, patient-centred approach aimed at improving outcomes and reducing mortality within affected communities.

Every child’s death is a profound tragedy for families and communities, and the report provides important national learning that should strengthen care, improve communication, and reduce avoidable harm. As the British Society for Genetic Medicine has previously cautioned in its response 2 to related public and legislative debates 3,4, these findings must not be interpreted in ways that stigmatise or criminalise consanguineous relationships. Rather, they should be used to inform culturally competent, evidence-based approaches that improve access to genetic counselling, community engagement, and equitable healthcare support for affected families.

Recognising the evidence and what it is telling us

NCMD analysis found that 7% (926) of 13,045 child deaths in England (2019–2023) were in children recorded as having consanguineous parents. Over half of these children lived in the most deprived neighbourhoods, and many were from Asian ethnic backgrounds.

Chromosomal, genetic, and congenital anomalies were prominent causes of death in this group. However, it is important to note that not all congenital conditions are genetic or inherited. The findings nonetheless highlight the need for timely genomic assessment, appropriate testing, and equitable access to specialist support, including genetic counselling and interpreting services.

We support the report’s core messages: improving the consistency of referral pathways, ensuring culturally sensitive communication, and strengthening access to genetic counselling and testing when clinically appropriate.

Bringing nuance: genetic risk is real, but context matters

While consanguinity can increase the chance of recessive conditions, the lived reality behind these data is complex. Health outcomes are shaped not only by inheritance patterns, but also by social determinants, migration and language barriers, prior experiences of healthcare, trust, stigma, and the availability and timing of appropriate clinical pathways. The NCMD report itself highlights deprivation and inequitable access to services as important contextual factors.

Genetic counsellors are trained to work within precisely this complexity and there are many examples of genetic counsellors involved in transformation projects across the country and in different communities 6. Our practice combines genomic expertise with advanced communication and psychosocial counselling skills to support informed, values-based decisions. This includes:

• ● taking a detailed, culturally informed family history and exploring genetic and non-genetic contributors to risk
  ● supporting families after diagnosis or bereavement, including future pregnancy planning where desired
  ● enabling shared decision making in a way that is sensitive to faith, culture, disability, grief, and family dynamics
  ● facilitating access to appropriate testing, and explaining results and options in a meaningful, non-directive way
  ● supporting communication within wider families where relevant

It is vital that policy and public discussion avoid reducing the issue to a single explanatory factor or attaching blame to families. Stigma and discrimination do not prevent genetic conditions; they delay care, damage trust, and can reduce engagement with services.

Reaffirming AGNC values: equity, dignity, culturally safe care

AGNC’s values include excellent holistic care, equity of access, ethical practice, and accountability. In line with the BSGM's EDI policy 7 we are committed to helping the workforce recognise and reduce barriers to care. In this context, “culturally sensitive communication” must mean more than good intentions. It requires practical, resourced changes that families can feel in real encounters.

AGNC supports the NCMD emphasis on consistent use of professional interpreting and accessible information. This should be standard throughout pregnancy care, neonatal and paediatric services, and specialist genomic pathways, not an optional extra.

What needs to happen next

Building on the NCMD recommendations, AGNC urges partners across the system to prioritise the following actions:

1. Proactive referral to genetic counselling after a child’s death where a genetic condition is suspected or confirmed
   Bereaved families should be offered timely genetic counselling, with sensitivity to grief, faith, culture, and language needs. This should include clear opportunities to discuss future reproductive options where families want this.
2. Earlier and more consistent pathways for genomic assessment and testing when clinically indicated
   Delays in testing and results can remove options and increase distress, particularly when families are navigating pregnancy again. Clear local pathways and strong links between paediatrics, maternity, fetal medicine and clinical genetics are essential.
3. Culturally safe communication as a clinical standard
   This includes professional interpreters, plain language resources, and training for mainstream clinicians in how to discuss recessive inheritance and family history sensitively. It also includes avoiding assumptions, avoiding moral judgement, and recognising how stigma can shape disclosure and engagement.
4. Co-designed, community-informed approaches that build trust
   Sustainable improvements are most likely when services are developed with communities, patient organisations and local leaders, and when information is offered in ways that families identify as useful and respectful. Trust is a clinical intervention in its own right.
5. A whole-system approach to inequality
   The NCMD findings sit alongside broader, well-established links between deprivation and child health outcomes. Tackling inequity requires investment in accessible services, continuity of care, and culturally safe pathways, not a narrow focus on one factor.

Our commitment

AGNC and its members stand ready to work with NCMD, NHS England, Integrated Care Boards, professional colleges, patient organisations and community partners to translate these findings into improved care and reduced harm. We support evidence-based action that strengthens genetic counselling and testing pathways, improves communication, and protects communities from further stigmatisation.

References

1. National Child Mortality Database Programme. Understanding consanguinity-related child deaths. National Child Mortality Database, 12 Feb 2026. Available at: https://www.ncmd.info/publications/child-death-consanguinity-genetic/
2. British Society for Genetic Medicine (2025) Parliamentary briefing on cousin marriages, January 2 2025. Available at: https://bsgm.org.uk/media/12702/british-society-for-genetic-medicine-Parliamentary-briefing-on-cousin-marriages-final.pdf
3. Marriage (Prohibited Degrees of Relationship) Bill - Hansard - UK Parliament accessed 17/02/24
4. Clancy, T., Dasani, P. and Sarkar, A. (2025) Cousin marriages should not be banned. Progress Educational Trust, 27 January. Available at: https://www.progress.org.uk/cousin-marriages-should-not-be-banned/
5. Guardian (2026) ‘One in 14 children who die in England have closely related parents, study finds’, The Guardian, 12 February. Available at: https://www.theguardian.com/society/2026/feb/12/one-in-14-children-who-die-in-england-have-closely-related-parents-study-finds
6. Khan N, Benson J, Macleod R, Kingston H. Developing and evaluating a culturally appropriate genetic service for consanguineous South Asian families. J Community Genet. 2010 Jun;1(2):73-81. doi: 10.1007/s12687-010-0012-2. Epub 2010 Aug 20. PMID: 22460207; PMCID: PMC3185987.
7. British Society for Genetic Medicine Equality, Diversity and Inclusion Policy. Available at: bsgm-edi-policy-final.pdf