Understand
Adoptees face significant health risks and challenges due to missing family medical history
Overview
Adopted individuals in the UK often face severe difficulties accessing their biological family's medical history, which can critically impact their healthcare, diagnoses, and treatment. Personal accounts from adults who grew up in care highlight systemic failures, a lack of psychological support when receiving sensitive documents, and delays in discovering hereditary conditions such as malignant hyperthermia and genetic tumour risks. While authorities across the UK require continuity of care records, practices vary widely, and patients lack a legal right to this information. Government officials acknowledge that current adoption support and record-sharing systems need an overhaul to better balance medical privacy with adoptees' health needs.
Key points
- Aaliyah, a 26-year-old adoptee, experienced significant distress and received no support when Bradford Council sent her unredacted care files containing earth-shattering personal and medical history.
- Dr Chris Tennyson discovered he carried a genetic condition causing life-threatening reactions to anaesthesia only at age 37, due to delays in being informed about his biological family's health.
- Courtney-Grace, diagnosed with a genetic mutation linked to tumours in her mid-20s, experienced previous misdiagnoses because doctors lacked her family medical background.
- When a child is adopted in the UK, their NHS number changes, and while medical records are supposed to merge, wider family medical history is often omitted or difficult to trace.
- None of the four UK nations gives patients a legal right to their biological family medical history, and support services vary significantly across regions.
- Minister for children and families Josh MacAlister stated that adoption support is not working well enough and that the government is examining how to improve medical record retention and sharing.