Adoptees Face Hurdles Accessing Family Medical History, Sparking Calls for Reform

Individuals adopted as children in the UK are encountering significant difficulties in accessing their biological family's medical history, a situation that can have profound implications for their own health and well-being. This lack of information can leave adoptees anxious about inherited conditions, potentially delaying vital diagnoses and treatments.

Aaliyah, 26, who was removed from her biological parents at seven months old, experienced this firsthand when she found a lump in her breast. Without knowledge of her family's genetic predispositions, she faced significant anxiety. "Not knowing anything about yourself genetically is terrifying," she stated.

Her efforts to obtain this information involved a lengthy process of making official data access requests to the local council. She described the experience as a "bureaucratic hellscape" and highlighted how knowing about her biological mother's struggles with eating disorders could have been beneficial during her own teenage battle with anorexia.

When a child is adopted in the UK, their National Health Service (NHS) number is changed to maintain anonymity. While existing medical records should ideally be merged with new ones, this process does not always include a wider family medical history. Support services for adoptees vary by region, with access often ending at age 21 or 25.

Bradford Council acknowledged shortcomings in Aaliyah's case, stating, "We are genuinely sorry that when Aaliyah received sensitive and personal information through her subject access request, we did not offer the support or signposting she needed." The council has since pledged to strengthen its approach to supporting adults accessing their records.

A Genetic Condition Revealed Late

Dr. Chris Tennyson, a 40-year-old clinical psychologist, faced a critical delay in learning about a genetic condition within his biological family. Adopted in the 1980s, he sought information about his paternal history in his 20s, but faced obstacles.

It wasn't until he was 33 that a meeting with his biological father was arranged. Hours before they were due to meet, a social worker informed Chris about a family history of malignant hyperthermia, a condition that can cause a life-threatening reaction to certain anesthetics.

This condition had been known within his biological family since 2000, and other family members had been offered testing. However, Chris, who was 14 at the time, was not notified. He eventually underwent genetic testing at age 37, 23 years after the condition was first identified in his wider family.

Chris believes a lack of understanding regarding the support needed for adopted adults contributed to this delay. He advocates for a system where adopted individuals' care records can be updated with newly available family medical information throughout their lives.

Government Review and Future Prospects

In response to such challenges, a government consultation on adoption support was launched in February 2026. Josh MacAlister, the minister for children and families in England, indicated that medical records are a key area under review. "Adoption support and how it's set up at the moment isn't working well enough and there are obvious gaps in a number of areas that we're going to be looking at making changes to," MacAlister stated.

He acknowledged the need to balance biological relatives' medical privacy with adopted individuals' right to access health-related information, adding, "We do need to change how we keep, retain, and share medical records."

While authorities in England, Northern Ireland, Scotland, and Wales have provisions for adoptees to access medical history, the practical application varies significantly. None of these nations currently grant a legal right to this information, though guidance advises that new clinical records for adopted children should contain sufficient details for continuity of care.

NHS England noted that in certain adoption circumstances, information about third parties may need to be protected from disclosure, but emphasized the importance of including sufficient information in new NHS records for continuity of care.

For individuals like Courtney-Grace, the availability of genetic information is critical for her five-month-old daughter, Tine. Cord blood was collected at birth and will be tested for a genetic condition when Tine turns five, allowing for early intervention if necessary. "She has the medical information," Courtney-Grace said. "She can say, 'My mum has this'."