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

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.

'Earth-shattering information'

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.

'I might never have known until it was too late'

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."

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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.