Patient consent for publication — an apology

CMAJ apologizes for violating its own policy, and explains
the policy to readers and authors

John Hoey, MD

CMAJ 1998;159:503-4

© 1998 Canadian Medical Association

Informed consent for publication of patient information is necessary because the physician­patient relationship is confidential. Physicians see patients in private. Access to medical records of such encounters is strictly controlled. Now, in practice, there are exceptions. Patients generally accept that their cases will be "discussed at rounds," knowing that they will likely benefit from the input of other health care professionals. Most would probably not object if their physician chatted over lunch to a colleague about their illness. But this gentle extension of the bounds of confidentiality is not the issue.

The problem of patient consent has arisen partly, it seems, because medical journals are now much more widely read by the general public than ever before. About a third of the 70 million MEDLINE searches each year at the Web site of the National Library of Medicine are performed by members of the general public. Thus, confidential information disclosed during a patient's visit to his or her physician and subsequently published as a case report or as part of a case series may be revealed via MEDLINE to the wider world. Although most of us would not be able to identify the individual patients in case reports, the patients can often identify themselves, and many are surprised (if not dismayed and annoyed) to see their private medical histories suddenly appear in the public domain.

So CMAJ, along with the other member journals of the International Committee of Medical Journal Editors (informally known as the Vancouver group), adopted the following policy regarding publication of scientific information about specific patients:²

Identifying details should be omitted if they are not essential, but patient data should never be altered or falsified in an attempt to attain anonymity. Complete anonymity is difficult to achieve, and informed consent should be obtained if there is any doubt. For example, masking the eye region in photographs of patients is inadequate protection of anonymity.

The requirement for informed consent should be included in the journal's instructions for authors. When informed consent has been obtained it should be indicated in the published article.

This is a fine statement, but in application the lines can become blurred. Consider, for example, the article "AIDS in Africa: a personal experience" CMAJ 1998;158[8]:1051-53 in the caption for the photograph on page 1052 the patient was described and his illness revealed.¹ The intention was to show the types of illness and suffering the author had witnessed during his stay in Zimbabwe. In editing the material we did not think of this description as a "case report," and the red flag of consent was not raised in our collective editorial minds. In retrospect, we agree with Dr. Robert Barnes (see letter on page 443) that revealing the identity of this patient without parental consent was a violation of our own policy.

To be clear, CMAJ reconfirms its support for the Vancouver group policy. Our instructions for authors ("Writing for CMAJ"), published regularly in the journal, add that case reports and case series "should have no more than 4 authors, 1 of whom must be the patient's attending physician. Signed consent to the publication of the report must be obtained from all patients or their surrogates."

Some grey areas remain, and, like our colleagues at the British Medical Journal,³ we plan to be alert to the subtleties. Take, for example, reports of interesting physician­patient interactions in which the physician learns something about herself, remembrances of patients long dead and the like. The type of paper we publish in our Experience section. Do these require informed consent from the patient? Generally, we think not and will use our judgement in determining the propriety of publishing them without consent.

We welcome comments from readers, authors and patients. We are willing to listen and, if appropriate, apologize.

Send a letter to the editor Envoyez une lettre à la rédaction

1. Rashid M. AIDS in Africa: a personal experience. CMAJ 1998;158(8):1051-3.
2. International Committee of Medical Journal Editors. Uniform requirements for manuscripts submitted to biomedical journals. CMAJ 1997;156(2):270-6
3. Smith R. Informed consent: edging forwards (and backwards). BMJ 1998;316:949-51.