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Implications of data protection legislation for family history

Implications of data protection legislation for family history
Implications of data protection legislation for family history
Clinical geneticists currently collect and store information on family history without explicit consent. Are they flouting the Data Protection Act?
Family history is important in many areas of medicine, but particularly clinical genetics. The family tree is an important clinical tool for answering questions about a patient's risk of developing a genetic disorder and appropriate management. Such records contain sensitive information, including family relationships, the health status of family members, and dates of birth, marriages, and pregnancies.
The names and contact details of family members may also be recorded to facilitate further investigation. Information about family members is usually gathered from individual patients and recorded without relatives' consent or knowledge. The tacit assumption has been that such data are in the public domain because they have been shared within the family and that explicit consent is therefore not required. The Data Protection Act 1998 and an increasing cultural focus on consent and confidentiality, however, question this assumption.
history, time, confidentiality, family history, families, cancer, family-history
0959-8138
299-301
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Parker, Michael
f08fdd2b-3c14-472f-b222-0ced5bb71bd4
Wheeler, Robert
266f8b1b-fb63-49d5-9b93-21242761e7b7
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Parker, Michael
f08fdd2b-3c14-472f-b222-0ced5bb71bd4
Wheeler, Robert
266f8b1b-fb63-49d5-9b93-21242761e7b7

Lucassen, Anneke, Parker, Michael and Wheeler, Robert (2006) Implications of data protection legislation for family history. BMJ, 332 (7536), 299-301. (doi:10.1136/bmj.332.7536.299).

Record type: Article

Abstract

Clinical geneticists currently collect and store information on family history without explicit consent. Are they flouting the Data Protection Act?
Family history is important in many areas of medicine, but particularly clinical genetics. The family tree is an important clinical tool for answering questions about a patient's risk of developing a genetic disorder and appropriate management. Such records contain sensitive information, including family relationships, the health status of family members, and dates of birth, marriages, and pregnancies.
The names and contact details of family members may also be recorded to facilitate further investigation. Information about family members is usually gathered from individual patients and recorded without relatives' consent or knowledge. The tacit assumption has been that such data are in the public domain because they have been shared within the family and that explicit consent is therefore not required. The Data Protection Act 1998 and an increasing cultural focus on consent and confidentiality, however, question this assumption.

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More information

Published date: 2006
Keywords: history, time, confidentiality, family history, families, cancer, family-history

Identifiers

Local EPrints ID: 40683
URI: http://eprints.soton.ac.uk/id/eprint/40683
ISSN: 0959-8138
PURE UUID: efb7777c-ffbc-4112-93e4-50dfc12fb6f0
ORCID for Anneke Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

Catalogue record

Date deposited: 10 Jul 2006
Last modified: 16 Mar 2024 03:23

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Contributors

Author: Anneke Lucassen ORCID iD
Author: Michael Parker
Author: Robert Wheeler

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