Role of next of kin in accessing health records of deceased relativesBMJ 2004; 328 doi: https://doi.org/10.1136/bmj.328.7445.952 (Published 15 April 2004) Cite this as: BMJ 2004;328:952
- Anneke M Lucassen, senior lecturer (email@example.com)1,
- Michael Parker, reader in medical ethics2,
- Robert Wheeler, paediatric surgeon and medical lawyer3
- 1Wessex Clinical Genetics Service, Princess Anne Hospital, Southampton SO16 5YA,
- 2Oxford Genetics Knowledge Park, Ethox Centre, University of Oxford, Oxford OX3 7LF
- 3Southampton University NHS Trust, Southampton SO16 5YB
- Correspondence to: A M Lucassen
- Accepted 17 February 2004
When potential benefits outweigh harms should clinical geneticists be given access to medical records of dead patients without relatives' consent?
Family history is an important tool used by clinical geneticists to assess risk. Patients' recollection of family illnesses can sometimes be inaccurate or lack detail. Information obtained through medical records of the patient's relatives is therefore important. When relatives are alive, the person seeking genetic advice usually asks them for access to their medical records. However, access is more difficult if the relatives are dead. This difficulty is the result of a combination of a lack of clarity in the law and a wariness among hospital departments about releasing information in the light of recent public inquiries and means that hospital departments are often unwilling to allow access to the medical records of deceased patients without consent from their next of kin. We use a fictional case based on real experiences to illustrate the difficulties that this practice can cause in obtaining relevant information for diagnostic and surveillance management of relatives.
Anne Cole is 38 years old and has a family history of cancer. Her mother died of breast cancer at the age of 42 and her maternal grandmother developed breast cancer in her late 40s. Her maternal aunt died three years ago from an abdominal malignancy, aged 56. Ms Cole wants to know whether she is at increased risk of developing breast cancer and what measures she can take to prevent it or improve her prognosis should she develop it.
The clinical genetics team attempts to confirm the details of Ms Cole's family history through cancer registries, and from pathology reports by accessing hospital records. The maternal …