The BMJ Ethics Committee has considered the matter of
publishing information from the doctor-patient relationship without
consent. The situation commonly arises in the "fillers" section of the
journal, which is meant to provide thought provoking clinical
anecdotes. The committee took the view that a strict application of the
consent requirement was excessively restrictive, and it was felt that
the Journal’s policy should be re-examined.
In
order to clarify the situation, the Committee has considered the policy
set out in the 1998 editorial and recommends the following revised
policy:
- Publication of any personal
information about a patient will normally require the consent of the
patient. This will be so even if identifying details are removed.
- Personal
information about a patient will not be published over the patient’s
refusal, except in the most exceptional circumstance of overriding
importance to public health.
- Publication without the consent of the patient will be permitted if all of the following conditions are met:
(a)
The patient who is the focus of the article is untraceable in order to
gain consent without an unduly burdensome effort or it is impossible or
unreasonable to expect consent to be obtained from the patient or (if
directly affected) the patient’s next-of-kin.
(b) The article
contains a worthwhile clinical lesson or public health point which
could not be as effectively made in any other way. ("Worthwhile" is
intended to sit on a spectrum between "interesting" which is the
publication threshold with patient consent, and "overriding public
health importance", which is the publication threshold over patient
refusal.
(c) A reasonable person in the patient’s position would not
be expected to object to the publication of the case. (This requires an
assessment of the intrusiveness of the disclosure and the potential
that it has for causing the patient, or the patient’s family,
embarrassment or distress. Particular attention must be paid here to
differences of cultural and social attitudes. It must not be assumed
that what is a matter of indifference in one society will have the same
status in another.)
(d) The risk of identification of the patient is
minimised by measures designed to prevent the identity of the patient
being revealed either to others or to the patient himself or herself.
(These measures will include anonymisation of the case and/or the
author. The publication without consent of photographs will require
particular scrupulous attention to anonymisation.) - The
committee will review all instances of publication without consent
under these guidelines on an annual basis to audit compliance with the
guidelines and also provide data for continuous improvement of the
guidelines.
These criteria prompted the
committee to recommend publication of the case from South America
mentioned above, and recommend against publication of the case of the
patriarchal family because it was felt that this would cause the
patient embarrassment and so a reasonable person would object to
publication.
The committee also considered several
situations, which should be distinguished from publication of
information from the doctor-patient relationship, addressed here
including:
Publication of research results
since these arise from the researcher-participant relationship.
Research ethics committees regulate consent and confidentiality in
research. Qualitative studies may pose special challenges regarding
whether a study participant is identifiable.
Fictional
cases since these arise in the imagination of the author and not the
doctor-patient relationship. Intentionally misleading the reader by
presenting fiction as fact, as in a recent case about suicide among
aboriginal peoples (JAMA 2000;284:1897–8; BMJ 2001;323:472), is not
permitted.
Publication of information
including photographs obtained from the public domain including wire
services and news archives. This information was not obtained from the
doctor-patient relationship but rather from the journalist-subject
relationship. This information is in the public domain and it is
ethical to republish it in BMJ. Such publication may offend some
readers, as in the case of a photo of a young boy with a learning
disability published alongside an article on methylphenidate (rapid
responses to BMJ 2001;322:259). Editors may want to exercise discretion
in publishing such information but this is a matter of etiquette, not
ethics.
We also recognise that in the
multimedia environment different media pose different challenges in
relation to anonymisation. This may be easiest with text, and more
difficult with photos and video. Data relating to aggregate anonymised
tissue and other samples will not normally be considered to be personal
information relating to a particular patient and publication of
research findings connected with such samples does not require patient
consent.
The objectives of this policy
are to ensure the protection of patient confidentiality while at the
same time seeking to facilitate the serious communication of medical
information. The Committee recognises that an absolutist doctrine of
confidentiality would effectively inhibit medical education and
research, and that therefore a balance must be achieved between the
patient’s reasonable expectations of confidentiality and the need for
scientific information. The policy set out above should afford adequate
protection for confidentiality without making informative exchanges
impossible. Our position recognises that ethics is rarely about
absolutes, context matters, and judgment is essential.