Confidentiality and disclosure of health information
14 October 1999
Foreword
Questions about confidentiality and disclosure are a staple area of ethical enquiry for the British Medical Association (BMA). The volume of such queries outstrips other issues of ethical concern raised by BMA members. While doctors are aware of their traditional obligations to protect confidentiality, they also recognise that ever more complex dilemmas arise from that duty. This guidance addresses some of the frequent questions put to the BMA.
General guidance cannot provide definitive answers for every situation. Much depends on the context of the individual case. Our aim, therefore, is to explore the key factors which need to be taken into account when such decisions are made.
Ultimately, doctors must make a reasoned analysis of the best course of action in a particular case. Normally, they do this together with patients. In some cases, however, this is impossible because patients are unconscious or lack mental capacity. Some lack insight into how their wishes badly infringe the rights of other people to have information that would help them protect their own health. The most difficult dilemmas of all often arise in cases of possible child abuse or other criminal activity where individuals refuse to allow disclosure of information, despite the fact that silence puts other people at risk of harm.
Interpretations of law and ethics are subject to change. Like any other advice, this document will need to be periodically updated.
Rarely is there an ideal time to issue guidance as there is always some potential change in sight and doctors need to know that some issues in this document may develop in the foreseeable future. Aspects of the implementation of the Human Rights Act, for example, may impact on future perceptions of personal privacy. As a result of a challenge in the European Court of Human Rights in 1999, new guidance may emerge for armed forces' doctors in respect of the duty to report homosexuality. Debate about acceptable uses of anonymised data may be taken forward later in 1999, as is indicated in the text. In any case of doubt, doctors should check the BMA's ethics website for the latest guidance or contact the Ethics Department or the General Medical Council.
In addition to specific areas where some change may be expected, queries around confidentiality and disclosure are generally becoming more complicated. Developments in genetic testing mean that GPs increasingly hold genetic data that arguably "belongs" in some sense to all of the family rather than just one individual. Confidentiality after the patient's death can be complicated by relatives' wishes and their rights under the access to health records legislation.
Medical information is regularly requested by third parties for a range of social purposes, such as patients' eligibility for state benefits, employment or insurance. Parallel with this, a growing recognition of children's autonomy means that disclosure of a young person's medical data, even to parents or social workers, can involve complex considerations. Particularly frequent areas of concern are questions around disclosure in cases where some aspect of patients' health may seriously harm others, such as by sharing contaminated needles or through driving with seriously impaired eyesight. The rights of family members to privacy can also come into conflict with the public interest when health records indicate suspicions of non-accidental injury to a vulnerable child or adult.
There is an ever growing list of demands on doctors to disclose information to third parties such as insurers, the police, social workers or driver licensing authorities. Over time, the BMA has developed a body of advice on such issues which is summarised in this document.
It is also worth noting that the BMA has also made unsuccessful efforts to clarify aspects of the law in respect of confidentiality. Two successive working parties looked at the issues.
The Inter-Professional Working Group, initially established by the Department of Health, met regularly at the BMA over the latter part of the 1980s. It produced a draft Parliamentary Bill and accompanying handbook on medical confidentiality and disclosure. The BMA's annual representative meeting in 1994 called for publication of such a code but legal ownership of the copyright of these multi-professional deliberations remained unclear, with the result that they were not widely published.
Nevertheless, as uncertainty about ethical and legal aspects of confidentiality continued in response to changes such as new billing and purchasing arrangements in the health service, the work was picked up in 1994 by a second working party. Under the chairmanship of Geoffrey Robertson QC, a wide range of health organisations participated and representatives of social workers and patient interests were consulted. In July 1994, the BMA issued a press release about the continuing need for confidentiality legislation and published an updated Bill and handbook.
Although introduced into the House of Lords by Lord Walton, the Collection, Use and Disclosure of Personal Health Information Bill was, unfortunately, never picked up by the government. Nevertheless, the BMA remains interested in exploring how aspects of confidentiality and disclosure could be clearly defined in law.
Part of the rationale for demanding statute was to extend to all others employed in the provision of health care - both in the private and state sector - the same sort of restraints on disclosure by which doctors and nurses are bound through their professional codes. Managers and administrators may have quite different perceptions about confidentiality to those of patients and health professionals. This needs to be addressed.
Similarly, patients may not be fully aware how use of their anonymised health data could help in areas such as medical research which benefits everyone. We have principally sought to address the dilemmas raised by doctors but recognise that this needs to be supplemented by clear advice and information for others with a strong interest in these issues.
The BMA would, therefore, like to encourage other organisations, including those representing patients, to ensure that more information is generally available about the uses of health data and about the right of confidentiality.
Furthermore, it is well recognised that patient confidentiality is desirable but not an absolute concept and can be breached if circumstances warrant such action. Problematically, however, no detailed or comprehensive analysis of the kind of factors which would warrant such disclosure has been published. Drawing heavily on published advice of professional bodies, particularly that of the General Medical Council, we seek to rectify that omission in the present document.
Dr Michael Wilks
Chairman, BMA Medical Ethics Committee