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News: Difficulties with confidentiality

27 November 2009

An ethically challenging area.

We were pleased to receive a copy of the new GMC guidance on confidentiality along with the latest copy of GMCtoday. We were particularly interested to see, in the section regarding genetic and other shared information, an acknowledgment of the difficulties with respect to confidentiality and children who have been adopted. The guidance states: ‘…a patient might refuse to consent to the disclosure of information that would benefit others, for example, where family relationships have broken down, or if their natural children have been adopted. In these circumstances disclosure might still be justified in the public interest.’

Doctors working as medical advisers for adoption agencies are frequently faced with the ethical dilemma of when to disclose information to adoptive families about a child’s birth family without the specific consent of that birth family, or indeed where consent has been deliberately withheld. The provision of full and detailed birth family health information can be extremely valuable for adopted children, both in ensuring access to appropriate healthcare, and in establishing a strong sense of identity.

A recent study by Hill and Edwards further highlighted the importance to adoptive parents of receiving such information. Medical advisers are, therefore, placed in a difficult situation when trying to balance the value of this information to children with the importance of respecting the confidentiality of birth families. The GMC guidance provides a useful starting point by acknowledging that there may be instances when birth family health information can be legitimately disclosed without consent, but further specific professional guidance is needed to help medical advisers in this ethically and legally difficult area.

Dr Hilary Marcer 
Registrar in Community Paediatrics and MSc student in Health Care Ethics

Dr Rosemary Jones
Consultant Community Paediatrician and Adoption Medical Adviser to Bath and NE Somerset