Consent, confidentiality, and the threat to public health surveillanceCommentary: Don't waive consent lightly—involve the public
BMJ 2002; 324 doi: https://doi.org/10.1136/bmj.324.7347.1210 (Published 18 May 2002) Cite this as: BMJ 2002;324:1210Consent, confidentiality, and the threat to public health surveillance
- Chris Verity, past chairman British Paediatric Surveillance Unit Executive Committee (christopher.verity@addenbrookes.nhs.uk)a,
- Angus Nicoll, directorb
- a Child Development Centre, Addenbrooke's Hospital, Cambridge CB2 2QQ
- b PHLS Communicable Disease Surveillance Centre, 61 Colindale Avenue, London NW9 5EQ
- Wirral Hospital, Arrowe Park, Upton, Wirral CH49 5PE
- Correspondence to: C Verity
Effective protection of public health requires direction from the information provided by disease surveillance1—for example, in the cases of AIDS and variant Creutzfeldt-Jakob disease surveillance data led to action that protected health. 2 3 Health surveillance relies entirely on prompt and accurate reporting of the occurrence of disease by doctors and other health professionals.1 Recently there has been increased concern in the United Kingdom about the need to maintain the confidentiality of information arising from consultations between doctor and patient. Documents have been issued regulating or advising on transfer of patient data. Some have argued that, unless needed for direct patient care, data should not be transferred to third parties without patients' explicit consent, or, alternatively, that all identifying information must first be removed.4 The difficulty in countering these arguments arises partly from the fact that health surveillance, including that for communicable diseases, has been neglected in official guidance on confidentiality.5 We and our colleagues are concerned that if some interpretations of this guidance were enforced they would impair or stop important surveillance activities and thus seriously prejudice public health.
Summary points
In the light of recent guidelines some doctors have been advised not to share health data that could potentially identify patients without either obtaining the patients'explicit consent or totally anonymising the data
These interpretations, if widely held and enforced, would compromise many surveillance activities essential for protection of the health of individuals and the public overall
The public should be made aware of the important ways in which information about individual patients is used to protect health
Those responsible for framing guidelines on the handling of clinical data and for advising doctors should consider issues related to health surveillance so that public health is not put at risk
Disease surveillance
Data derived from patient consultations, investigations, and …
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