Analysis And Comment Ethics

Implications of data protection legislation for family history

BMJ 2006; 332 doi: https://doi.org/10.1136/bmj.332.7536.299 (Published 02 February 2006) Cite this as: BMJ 2006;332:299
  1. Anneke Lucassen, senior lecturer (a.m.lucassen@soton.ac.uk)1,
  2. Michael Parker, professor of bioethics2,
  3. Robert Wheeler, paediatric surgeon3
  1. 1 Wessex Clinical Genetics Service, Princess Anne Hospital, Southampton SO16 5YA
  2. 2 Oxford Genetics Knowledge Park, Ethox Centre, University of Oxford, Oxford OX3 7LF
  3. 3 Southampton University NHS Trust, Southampton SO16 5YA
  1. Correspondence to: A Lucassen
  • Accepted 4 January 2006

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.

Case history

Ms White, a 27 year old woman, attends the genetic clinic because of a concern about her family history of cancer. Her father had bowel cancer at the age of 42 and a paternal aunt had a gynaecological cancer at a similar age. She has two further paternal aunts about whom she knows little (figure). Ms White is advised to try to find out some more details about her family history since it could reflect a mutation in one of the genes predisposing to bowel or womb cancer. However, such details could also provide reassurance that there is a relatively low risk of such a mutation and Ms White's medical management therefore depends on such details. She is given standard consent forms for access to medical records to pass to her father and aunt.

Ms White's family history

Some time later, Ms White's …

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