When is the right time to tell a child that they have a serious medical condition? And what happens when a mother’s refusal to tell jeopardises her child's chances of getting better?
The last in the current series of Inside the Ethics Committee tells the real life story of Sarah. She has hepatitis B, which she caught from her mother at birth.
Like other children with the condition, Sarah has no outward symptoms. But the virus that causes hepatitis B silently damages the liver and can eventually cause it to fail. There is also a long term risk of liver cancer.
Sarah’s mother is adamant that she doesn’t want her daughter to know what is wrong with her. She has seen families shunned in her community for having hepatitis B and she feels that Sarah can’t be trusted to keep the secret.
But hepatitis B is highly infectious, through blood and sexual contact. As Sarah reaches adolescence, the medical staff become increasingly uncomfortable about keeping the diagnosis from her.
Furthermore, Sarah’s ignorance about her condition could jeopardise her participation in a drug trial that could be life changing.
- Does Sarah have a right to know that she has hepatitis B? And should her school be informed to minimise the risk to other children?
- How do clinical staff reconcile what they think is right for Sarah with the wishes of her mother?
- What are the ethics of putting children into clinical trials?
- How does taking part in a clinical trial affect the treatment decisions that clinicians, children and their parents make?
- Deborah Bowman is a Senior Lecturer in Medical Ethics and Law at St George's Hospital University of London.
- Gareth Tudor-Williams is a Paediatrician at Imperial College Healthcare NHS Trust. He has a special interest in hepatitis B and is a member of the St. Mary’s Hospital Research Ethics Committee.
- Priscilla Alderson is Professor of Childhood Studies at the Institute of Education and a member of the Institute’s Research Ethics Committee.