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Family history and adoption in the UK: conflicts of interest in medical disclosure
  1. C M Hill1,
  2. R Wheeler2,
  3. F Merredew3,
  4. A Lucassen4
  1. 1
    Division of Clinical Neurosciences, University of Southampton, Southampton, UK
  2. 2
    Wessex Regional Centre for Paediatric Surgery, Southampton University Hospitals Trust, Southampton, UK
  3. 3
    British Association for Adoption and Fostering, London, UK
  4. 4
    Academic Unit of Genetic Medicine, University of Southampton, Southampton, UK
  1. Correspondence to Catherine M Hill, Mail Point 803 G, G level, Southampton General Hospital, Tremona Road, Southampton SO16 6YD, UK; cmh2{at}soton.ac.uk

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Radical Intervention

Every year, around 4000 children are adopted from public care in the UK.1 Adoption is “one of the most radical interventions to make in the life of a child”2 as it legally terminates the child’s relationship with their birth family. Adoption medical advisors (the usual title for doctors, generally paediatricians, who work with adoption agencies) play an important role in collating and interpreting the child’s medical and developmental history which is then shared with prospective adopters. A key part of this history is a child’s family medical history. Contemporary adoption practice encourages frank disclosure of such medical information to prospective adoptive parents. Indeed, the Adoption Act Regulations 2005 state that: “The adoption agency must obtain, so far as is reasonably practicable, the information about the health of each of the child’s natural parents and his brothers and sisters (of the full blood or half-blood)”. Adoption medical advisors are privy to information about birth parents’ medical history through a variety of sources but do not always have consent to share this.3 A tension between preserving birth parents’ right to confidentiality – especially when they have specifically indicated they do not wish to share their medical information – and a child’s interest in knowing such information about their parents – because it might have relevance to their own future – therefore needs to be negotiated. If medical information is not shared at this point, the adopted child may experience a lifetime of ignorance about their family health history and possible future health risks.

Using fictitious cases based on clinical practice this article highlights the tensions about information sharing in adoption practice, reviews current professional guidelines and legislation, and suggests possible solutions.

Adoption past and present

Before the 1976 Adoption Act most children adopted in the UK were “illegitimate” infants. Social policy and legislation …

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