Implications of data protection legislation for family history

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).

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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Contributors

Author: Anneke Lucassen

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