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Family history and adoption in the UK: conflicts of interest in medical disclosure

Family history and adoption in the UK: conflicts of interest in medical disclosure
Family history and adoption in the UK: conflicts of interest in medical disclosure
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.

0003-9888
7-11
Hill, C.M.
867cd0a0-dabc-4152-b4bf-8e9fbc0edf8d
Wheeler, R.
14e4ca57-b2c2-4ab1-84d8-4786f211182a
Merredew, F.
859f9867-6862-4710-806b-79d9f2ded796
Lucassen, A.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Hill, C.M.
867cd0a0-dabc-4152-b4bf-8e9fbc0edf8d
Wheeler, R.
14e4ca57-b2c2-4ab1-84d8-4786f211182a
Merredew, F.
859f9867-6862-4710-806b-79d9f2ded796
Lucassen, A.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5

Hill, C.M., Wheeler, R., Merredew, F. and Lucassen, A. (2009) Family history and adoption in the UK: conflicts of interest in medical disclosure. Archives of Disease in Childhood, 95 (1), 7-11. (doi:10.1136/adc.2009.164970).

Record type: Article

Abstract

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.

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More information

Accepted/In Press date: 21 September 2009
e-pub ahead of print date: 29 December 2009
Additional Information: A correction has been attached to this output at http://dx.doi.org/10.1136/adc.2009.164970corr1

Identifiers

Local EPrints ID: 73399
URI: http://eprints.soton.ac.uk/id/eprint/73399
ISSN: 0003-9888
PURE UUID: f51d0735-e620-4e94-9879-ba9286920e0d
ORCID for C.M. Hill: ORCID iD orcid.org/0000-0003-2372-5904
ORCID for A. Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

Catalogue record

Date deposited: 05 Mar 2010
Last modified: 14 Mar 2024 02:46

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Contributors

Author: C.M. Hill ORCID iD
Author: R. Wheeler
Author: F. Merredew
Author: A. Lucassen ORCID iD

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