Implications of data protection legislation for family history

Lucassen, Anneke, Parker, Michael and Wheeler, Robert (2006) Implications of data protection legislation for family history. British Medical Journal, 322, (7536), 299-301. (doi:10.1136/bmj.332.7536.299).


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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.

Item Type: Article
Digital Object Identifier (DOI): doi:10.1136/bmj.332.7536.299
ISSNs: 0007-1443 (print)
Related URLs:
Subjects: H Social Sciences > HQ The family. Marriage. Woman
J Political Science > J General legislative and executive papers
K Law > K Law (General)
Divisions : University Structure - Pre August 2011 > School of Medicine > Cancer Sciences
ePrint ID: 40683
Accepted Date and Publication Date:
Date Deposited: 10 Jul 2006
Last Modified: 31 Mar 2016 12:11

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