What happens when you grow up not knowing your family medical history?

When Aaliyah found a lump in her breast, she was anxious to find out if she had inherited an increased risk of cancer.

But because she had been removed from her biological parents at the age of seven months and later adopted, she had no way of accessing her family medical history.

"Not knowing anything about yourself genetically is terrifying," says the 26-year-old, "you can't even begin to imagine it."

The lump turned out to be non-cancerous, but it was one of many occasions when she found herself unable to answer questions about her biological family's health.

Aaliyah, now a trainee solicitor, spent years trying to source information from local authorities and eventually made an official data access request to Bradford Council, which removed her from her biological family as a baby.

She says the whole process took its toll.

"I would say bureaucratic hellscape is an understatement," she admits.

Days before Aaliyah's 25th birthday, a large unmarked envelope landed on the doormat of her home, in Birmingham.

"I rip it open, thinking it's an early birthday present," she says.

But what was inside was the response to her data request - pages and pages of her family history, including some medical details she had been painstakingly trying to track down for years.

The documents contained upsetting information alluding to the reason she was taken into care, alongside court records and a personal letter from her social worker.

"They were just given to me in a completely nondescript pile, and they contained completely earth-shattering information, of which I don't think I have ever recovered from," she says.

Aaliyah says knowing about her biological family's health could have helped her understand her own medical concerns.

"My biological mother struggled with eating disorders all her life," she says. "I had very severe anorexia in my teens and that would have been incredibly useful to know."

When a child is adopted in the UK, their NHS number - or equivalent health service identifier - is changed to protect their anonymity.

Their existing medical records should be merged with their new record, but this does not necessarily include their wider family medical history.

And while some local authorities offer specialist support for adoptees up to 21 or 25, the ease of access can vary across the country.

The BBC contacted Bradford Council, which said: "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. We recognise that we should have done more.

"Following Aaliyah's experience, we are strengthening our approach so that adults accessing their records are given clear information about the support available."

Bradford Children and Families Trust has now offered Aaliyah a meeting to further discuss her experience.

For Dr Chris Tennyson, a delay in getting information about his birth father's health could have put his life at risk.

The 40-year-old clinical psychologist, from Belfast, was adopted as a baby in the 1980s to "a really loving mum and dad, [in a] really comfortable family home".

But in his 20s, he became increasingly curious about his biological origins. He met his birth mother, but his attempts to find out about his father stalled after social workers warned him off asking questions.

Eight years later, Chris tried to trace him again, but it wasn't until he was 33 that a meeting was finally arranged.

Then, on the afternoon the father and son were due to meet, a social worker approached Chris.

"There's something that I need to share with you," the social worker told him. "Your father wants me to let you know that there's a genetic medical condition within your family."

A member of Chris's biological family died in 2000, when the condition came to light. At the time, other members of the family were offered testing. But Chris, who was then aged 14, was not contacted.

The condition, called malignant hyperthermia, causes a potentially life-threatening reaction to certain drugs used during anaesthesia.

While genes linked to it can run in families, not everyone who inherits one of these will necessarily experience a reaction with anaesthesia.

After undergoing genetic tests, Chris discovered his potential risk at the age of 37 - some 23 years after the condition had become known in his wider family.

He says a lack of understanding of how to support adopted adults resulted in the delay in him getting tested.

Chris, who now works with adoption and fostering services in Northern Ireland, says the lack of available information for adoptees is "a huge blind spot".

"There needs to be some kind of mechanism where adopted people's care records can be updated with family information that becomes available throughout the lifespan."

First-time mum Courtney-Grace says she is relieved her baby daughter, Tine, will have access to the crucial family medical history she lacked when she grew up.

Now living in the North of England, the 28-year-old was adopted as a baby and spent time in foster care as a teenager.

"The only thing we knew about my medical history is my biological mom was mentally ill, and had depression."

In her mid-20s, Courtney-Grace was diagnosed with a genetic mutation, which can be inherited and is associated with an increased risk of tumours.

Her symptoms had previously been misdiagnosed as asthma and anxiety, which she says was based off the little doctors knew about her mum.

Courtney-Grace believes allowing medical professionals access to familial history without interfering with data protection rules wouldn't just benefit adoptees, but the entire population.

"The system needs a bit of an overhaul as a whole," she says.

A government consultation on adoption support was launched in February 2026.

Josh MacAlister, the minister for children and families - who is responsible for adoption and children's social care in England - told the BBC that medical records was one of the issues being looked at.

"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 said.

He acknowledged that the current system did not strike the right balance between safeguarding biological relatives' medical privacy and enabling adopted people to access information relevant to their own health.

"We do need to change how we keep, retain, and share medical records," he said.

Authorities in England, Northern Ireland, Scotland and Wales all make provisions for adoptees to access their medical history, but the way this operates in practice can vary hugely in the different nations.

None of the four nations gives patients the legal right to that information.

But they advise that when a new clinical record is created for an adopted child, enough information must be kept to support continuity of care.

NHS England said depending on the circumstances of an adoption there may be a need to "protect from disclosure any information about a third party".

But it added that it is important any new NHS records, if created, contain sufficient information to allow for a continuity of care.

For Courtney-Grace, her own diagnosis means her five-month-old daughter will now be closely monitored.

Cord blood was collected when Tine was born, and it will be tested for the genetic condition when she is five. If she has inherited it, a plan will be put in place.

"She has the medical information," Courtney-Grace says. "She can say, 'My mum has this'".

A list of organisations in the UK offering support and information with some of the issues in this story is available at BBC Action Line