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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
