A paper described a problem of two women who wanted their fetuses to be tested for a genetic condition, but where in both cases their partners had refused to give consent. Should the journal publish such a paper without obtaining consent from the partners? The editors think not, but the authors are unconvinced.
_ It would be impossible to completely anonymise the case even if mention was not made of the genetic condition. _ One solution might be for the case to be published in the form of a discussion and alluded to in an abstract sense, although the authors had indicated that they would prefer to leave the case reports in. _ Public interest can override confidentiality.
The journal published the article on the general subject, but with no information on the particular cases. The authors eventually agreed that it would be wrong to publish the case reports without consent from the partners.
An article describing three similar cases was submitted to Journal A. The author was asked to provide evidence of the patients’ consent for their details to be used in the paper. The author replied that all the patients’ personal details in the report had been anonymised and that signed consent would destroy this. Also, two of the three patients had since died and correspondence could be distressing for the relatives. The editor explained the importance of consent and that she would be happy to accept a signed letter from the author confirming that consent had been obtained for publication of all three cases. The author had obtained permission from the living patient and also from the relatives of one of the patients who had recently died. The relatives of the other patient could not be traced. The patient’s wife had also died and there were no children. The editors accepted this explanation and peer reviewed the article for possible publication.
_ Legally, permission is required from the living unless they are under 16 or incapacitated. _ Relatives have no place in giving permission on behalf of deceased patients. _ The explanation from the authors was, however, deemed acceptable as it was agreed that they had gone as far as possible and had acted courteously.
A specialist society wishes to post “case of the month” on the society website. The society is not proposing to obtain patient consent from all patients, but will anonymise the case reports instead. It has been suggested a case might be anonymised by changing details including age, occupation, or gender. It has also suggested that there is often much to learn from patients who have died, from whom consent would not be possible. Is this approach reasonable?
To do this would be in breach of the UK General Medical Council guidelines.
Rendering the patients anonymous is not enough.
If a patient has died, permission is not required, but should be obtained from the next of kin as a courtesy.
The facts regarding age, occupation and gender could not be altered.
The editor was advised that patient consent must be obtained, and that patient details must not be modified in an attempt to provide anonymity. The specialist society will inform authors that they must obtain signed patient consent before cases can be published.
An author requested advice about reporting unusual ocular manifestations of a patient who died from a fatal injury. The author sought the permission of the family to report the case, but they also requested that the patient’s name be added to the report in her memory. The author has proposed to add the following in the acknowledgement section: “The authors are grateful to the family of forename/surname for their permission to publish this case report, and at their request, have named the deceased, in memoriam.” What does the committee think?
_ If the deceased patient is identifiable, then there is a breach of confidence, and confidence survives death. _ The family cannot absolve this, but if it is in the public interest, then the name could be provided. _ The editor has to be satisfied that the dead patient would not have objected to any publicity, and that no other person(s) can be hurt or harmed by the publication of her name. _ If these criteria can be satisfied then a redrafted form of words could be published—for example: “The authors are grateful to the family of forename/surname for their cooperation in the publication of this case report, and at their request have identified her as the deceased, as a memorial to her.”
An article was published with three authors’ names. Not all of the authors’ signatures had been included on the original submission letter. A complaint was lodged by Y, who said that X had submitted the paper without either his or Z’s consent or knowledge, and that there were several specific errors and omissions. Y then submitted a statement for publication in the journal dissociating himself from the published article. The statement was copied with Y’s approval to the corresponding author, X, to give him the opportunity to respond. X responded and arranged for two colleagues, A and B, to submit statements about the research work in question. Y (the complainant) also submitted further information about the research work. This correspondence spawned a series of allegations, denials, explanations and counter-allegations. Although the journal feels it should publish Y’s dissociation from the article in the journal, would it be wise to publish this without anything from X? Additionally, if the editors are sure that X submitted the article without the approval of his supposed co-authors, should action be taken against him, such as barring him from publishing in the journal for a period of time?
_ The corresponding author should have the right to reply. _ There had been a clear breach of publication ethics as not all the authors signed the original agreement on submission. _ It probably is not enough to publish a statement and the matter should be referred to the head of the institution for an investigation, after which the journal should publish the consequences. _ A representative from the other institution—that of author X’s—should also have the right of reply, and the editor would also need to comment on the issue. _ Institutions can hide behind confidentiality agreements and there is evidence that internal enquiries are not always useful. _ The heads of the institutions of all the authors should be informed and the journal should not make any public statement until the responses had been received.
A letter of dissociation from the author was published by the journal. The heads of the institutions were not contacted.
A paper containing three case reports of the same disease was accepted for publication. The disease reported is fairly rare. The parents of one of the cases consented to publication on condition that their daughter was referred to in the paper by her first name rather than as a case number. This particular case has been discussed in the course of a national inquiry, but it is not clear whether the other two cases were discussed. If the editor publishes this paper, the identity of the other two cases might be revealed if he respects the wishes of the parents. What does COPE advise?
Informed consent must be sought from the relatives of the other two cases. The editor should approach the authors to this effect. _ The fact that a national inquiry is under way is not relevant. _ The authors should also inform patients that the journal has a website and that there are regular press releases, so the case might receive wide dissemination.
The other two families had already given their consent. The authors contacted them again to alert them to possible press coverage. No objections were raised so the article was published with the patient’s name in full, as requested by the parents.
A paper was submitted in which a young surgeon described five patients who died over six months under the care of one surgeon. The author suggested that the surgeon was dangerous and that something should have been done. Nothing was done and the surgeon has since retired. The paper, a very personal one, provides an interesting insight into the difficulties that doctors have dealing with problem colleagues. Should the editors: _ attempt to get consent from the patients’ relatives? _ worry about the fact that somebody, somewhere, is likely to be able to identify the surgeon, particularly if the article is signed rather than published anonymously?
_ This case had already been published in a journal the preceding year. _ The system has changed in the past 10 years since these issues first arose, but the committee felt that the information could be published as a source of interest on what used to happen. _ It was suggested that the article be re-published, accompanied by five people’s responses as to what would happen now.
In 1995 a group of nine authors published a paper in a leading general medical journal. Copyright was granted by all authors to the journal. In 1998 the senior author received a complimentary copy of a recently published book. One of the chapters was essentially a reprint of the original paper. It was attributed to the sixth, first and second authors. Neither the first nor second author (the guarantor) had ever heard of this chapter or the book. They had not consented to the publication or the authorship of the chapter. The remaining six original authors were acknowledged for their help with the study, but were not listed as authors of the chapter. The chapter acknowledged that the data it contained had been published before. Enquiries to the publisher of the textbook revealed that the sixth author had applied for and, for £60, had been granted permission to use the original article by the medical journal in which it was first published. What are the professional, ethical and legal issues? What should be done?
The editor was advised to write a conciliatory letter to the publishers and a letter of complaint to the author who had reproduced the article without permission.
The author admitted he had made a mistake and apologised profusely.
A doctor has submitted an account of how his daughter falsely accused him of having abused her as a child. His daughter is another British doctor. We would like to publish the account as part of a package of articles on false memory syndrome. The questions we are considering are: (1) Can it ever be right to publish something that describes the intimacies of a family conflict, to illustrate a subject? (2) Do we need the daughter’s consent even if we are going to publish the paper anonymously? (3) Should we give the daughter a right of response? (4) Should we go ahead and publish the paper even if the daughter refuses to give her consent and declines to respond?
The father did not want to try to get consent from his daughter. Nothing was published.
We published an article that contained a detailed account of a woman’s obstetric and psychiatric history. The information had been obtained from a court judgement and is published in Family Law Reports. The article had been written by two people who had never met the patient in question. The patient’s consent was not sought because the information was on the public record.
We subsequently received a letter for publication from the obstetrician and psychiatrist who had treated the patient. For this, we did seek consent from the patient, because the information had emerged from the doctor–patient relationship. Consent was given. On the day the letter was published, we received a letter from the patient’s solicitor saying that she was very upset at the detail given in the original article and could not understand why we had published it.
Are we operating double standards as the patient obviously thought we were, by publishing information on the public record? Should we get consent from patients in these circumstances?
This information is already in the public domain and therefore it is OK not to get patient consent.
We told the solicitors that the material was on the public record and that was why we had published it. They did not pursue the case.