- Published
When Aaliyah found a lump in her breast, she was anxious to find out if she had inherited an increased risk of cancer.
asserted
she → publish → 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.
asserted
herself → remove → 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.
asserted
which → spend → baby
She says the whole process took its toll.
asserted
process → say → toll
"I would say bureaucratic hellscape is an understatement," she admits.
asserted
she → say → ?
Days before Aaliyah's 25th birthday, a large unmarked envelope landed on the doormat of her home, in Birmingham.
asserted
envelope → land → Birmingham
"I rip it open, thinking it's an early birthday present," she says.
asserted
she → rip → it
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.
asserted
she → include → 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.
asserted
she → contain → which
Aaliyah says knowing about her biological family's health could have helped her understand her own medical concerns.
uncertain
her → say → concerns
"My biological mother struggled with eating disorders all her life," she says.
asserted
she → struggle → disorders
"I had very severe anorexia in my teens and that would have been incredibly useful to know.
asserted
that → have → teens
"
When a child is adopted in the UK, their NHS number - or equivalent health service identifier - is changed to protect their anonymity.
asserted
number → adopt → anonymity
Their existing medical records should be merged with their new record, but this does not necessarily include their wider family medical history.
asserted
this → exist → 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.
asserted
ease → offer → 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.
asserted
she → contact → support
We recognise that we should have done more.
asserted
we → recognise → more
"Following Aaliyah's experience, we are strengthening our approach so that adults accessing their records are given clear information about the support available."
asserted
adults → follow → support
Bradford Children and Families Trust has now offered Aaliyah a meeting to further discuss her experience.
asserted
Trust → offer → experience
'I might never have known until it was too late'
uncertain
it → know → ?
For Dr Chris Tennyson, a delay in getting information about his birth father's health could have put his life at risk.
uncertain
delay → get → 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".
asserted
psychologist → adopt → home
But in his 20s, he became increasingly curious about his biological origins.
asserted
he → become → origins
He met his birth mother, but his attempts to find out about his father stalled after social workers warned him off asking questions.
asserted
workers → meet → questions
Eight years later, Chris tried to trace him again, but it wasn't until he was 33 that a meeting was finally arranged.
asserted
meeting → try → him
Then, on the afternoon the father and son were due to meet, a social worker approached Chris.
asserted
worker → meet → Chris
"There's something that I need to share with you," the social worker told him.
asserted
worker → be → him
"Your father wants me to let you know that there's a genetic medical condition within your family."
asserted
you → want → family
A member of Chris's biological family died in 2000, when the condition came to light.
asserted
condition → die → light
At the time, other members of the family were offered testing.
asserted
members → offer → testing
But Chris, who was then aged 14, was not contacted.
asserted
who → age → ?
The condition, called malignant hyperthermia, causes a potentially life-threatening reaction to certain drugs used during anaesthesia.
asserted
condition → call → anaesthesia
While genes linked to it can run in families, not everyone who inherits one of these will necessarily experience a reaction with anaesthesia.
asserted
who → link → 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.
asserted
condition → undergo → family
He says a lack of understanding of how to support adopted adults resulted in the delay in him getting tested.
asserted
him → say → delay
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".
"
asserted
lack → work → adoptees
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.
asserted
that → need → lifespan
My daughter will have the knowledge I wish I had
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.
"
asserted
old → have → teenager
The only thing we knew about my medical history is my biological mom was mentally ill, and had depression."
asserted
mom → know → 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.
asserted
which → diagnose → tumours
…and 20 more, not listed.
The Aporia
