J Oral Maxiiiofac Surg 56:413, 1990

Patient Consent for Publication

The publication of case reports is an important way of relaying useful information of a very practical nature. Although the material presented may not be as scientifically based as that provided in a clinical article involving a larger series of patients, case reports often describe more unusual, less frequently encountered conditions or unique procedures that would ordi- narily take much longer to reach the pages of a journal if the author needed to wait for greater numbers of cases for better documentation. Thus, although read- ers need to be careful in making positive clinical judgments based solely on single case reports, in sum they often permit logical therapeutic decisions to be made.

In the past, little or no effort was made to hide the identity of patients described in case reports other than to omit their initials or to mask their eyes in photographs. However, in 1978 the International Committee of Medical Journal Editors (ICMJE) was founded to establish uniform guidelines for manu- scripts. The ICMJE, which represented 11 medical journals, subsequently made recommendations regard- ing such matters as duplicate publication, the defini- tion of authorship, conflict of interest, editorial free- dom and integrity, and protection of patients’ privacy and anonymity that were generally accepted by most journals. However, in 1995, the ICMJE issued an expanded statement on privacy and anonymity that stated: “Identifying information should not be pub- lished . . . unless the patient gives written informed consent for publication.” This statement was devel- oped in response to complaints from patients who identified themselves, or were identified by family or friends, in reports published in medical journals; changing societal expectations; and the ever present legal considerations. Whereas, maintaining anonymity was generally acceptable, the issue of informing patients about publication and obtaining permission to do so raised questions that were not anticipated and that polarized opinions on the matter.

Those who oppose the concept argue that strict adherence to this policy by a journal could stifle the timely dissemination of important health-related infor- mation and therefore puts the welfare of a single patient over that of the general public. However, those who favor strict conformity believe that indi- vidual patient’s rights nearly always outweigh those of the public. They also believe that patients, even if not identifiable, still have the right to control the use of their personal medical information and that it is

unethical to publish such accounts without permis- sion even if anonymity is maintained. Moreover, they share the patients’ concern that knowledge about their medical problems by others could lead to discrimi- nation or recrimination, as well as to possible job disqualification, loss of employment, or even lack of insurability.

A variety of solutions have been proposed to address the problem of violating a patient’s privacy by publishing identifiable information. The most obvious is to obtain informed consent whenever possible. However, even this process can have its complications; a patient may refuse to grant permission and thus valuable information may be lost. More commonly, identification is avoided by omit- ting such data as the patient’s age, sex, and occupation from the report. On the other hand, such information may be important in interpreting the data presented and for subsequent analyses made on the basis of cumulative case reports. For these reasons, an author should never substi- tute altered data when such distinguishing demographic information is removed. Moreover, case material should never be disguised because this is also misleading.

The recommendations of the ICMJE regarding pa- tient consent for publication are just that-recommen- dations-and need not be followed by any journal. Currently, the Journal of Oral and Maxillofacial Szdrgeq requires informed consent only for the use of facial photographs and not for publication of case reports or clinical articles. However, the maintenance of a patient’s anonymity is a legitimate issue and every reasonable effort should be made to achieve this goal. When preparing material for publication, authors should carefully review their manuscript for any identifying information and remove those items that are not absolutely essential for understanding the clinical circumstances. This is the policy of this journal as well as most other reputable journals.

The decision regarding what information might result in patient identification, and therefore should be removed from a report, is not an easy one, and this needs to be determined on a case-by-case basis. A suggested litmus test is to ask yourself whether you would like similar information about you or your family published without consent. Until ways are found to reconcile the preservation of patient confiden- tiality with the need to communicate important infor- mation in the literature, such judgments will have to suftke.

DANIEL M. LASJSIN

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