Tom, a 15-month-old baby, is in foster care with a view to being placed for adoption.
He has a 50:50 chance of developing a genetic condition called Multiple Endocrine Neoplasia type 1, or MEN type 1.
The disease causes mostly benign tumours to develop in the body, especially in glands that produce hormones, such as the pancreas, adrenals or pituitary. The disruption to hormone production can make people very seriously ill and if tumours are in the pituitary gland, which is located in the base of the brain, it can cause blindness.
Symptoms can appear in childhood but more often occur in adulthood.
The local authority want Tom to be tested while he is still a baby so any prospective adoptive parents can be told whether he is likely to develop the condition or not.
- When should genetic testing of children be done?
- Is it in anyway in Tom’s best interests to be tested for a condition years earlier than he would have been if he wasn’t being placed for adoption?
- Does a child have a right not to know?
- Who makes decisions for vulnerable children in care?
- Dr Deborah Bowman is a Senior Lecturer in Medical Ethics and Law at St George's Hospital University of London.
- Alison Hunter is a consultant paediatrician on Sheffield Children's NHS Foundation Trust's Clinical Ethics Forum and Medical Adviser for Adoption for Sheffield Local Authority.
- Chris Barnes has 20 years experience as a genetic counsellor at Guy’s and St Thomas’s hospital and is co-author of the British Association of Adoption & Fostering guidelines on genetic testing and adoption