The Ethics Committee recently reviewed a case regarding the use of the names of patients whose names had already been revealed by other media. Our discussion is anonymous, as usual, because we assure that to those who consult us, but also because we wish to focus on the principles of publication ethics and not the particulars of individuals or publications.
We are currently putting together a history of the 2002-2003 SARS outbreak. Several of the early deaths were widely referred to by name in the literature on SARS—notably a businessman who was infected and died, and a staff member of a health organization. Although we know that the normal convention is not to name patients in medical literature, in this case we feel that that to refer to these people by their initials would be very odd (as they have become so well known) and would detract from the historical value of the book.
This question has arisen because in another country, the first SARS death was a health care worker who became infected and subsequently died of the disease, and was also widely named in press reports. To be consistent within the book, we feel that we should name this patient as well. However, the author of the chapter on that country has pointed out that the Department of Health did not release the patient's name and that the press acquired it from other sources. Our view is that this is not really material; the fact is that contemporaneous accounts named the patient and that it would be odd for the "official" history of the outbreaks not to do so.
So we really have 2 questions:
Is there anything ethically wrong in naming cases of SARS, whether or not they died, in our book?
In the second case, does the fact that the patient was not officially named by the Department of Health make any difference?
The Committee's Response
It is well accepted that the confidentiality of patients must be preserved in medical publications, and the practice of even referring to them by initials is nowadays seldom used. Even if not named, if the circumstances of the case are unique enough to allow someone to guess identity, the patient's permission must be sought. Thus, current practice would dictate that neither the names nor the initials of these patients should be published without their permission or that of their immediate families.
In this case, that information had already been widely publicized. Nonetheless, as clarified in the comments below, that does not make it ethical and the consensus was that names should not be used without permission.
Interestingly enough this also has relevance to the Committee's own practice, as we have been asked by several readers why we continue to present as anonymous, Ethics Committee cases which have been the subject of press reports and in which full names have been used (by others). The arguments are the same, that we have not been given permission to do so by the individuals or journals and that the fact others have done it does not make it right. Additionally, we prefer to concentrate on the ethical issues and principles involved in these cases and keep them generalizable, rather than focus on individuals.
Committee Member Comments
The use of victims' name should not be done simply because it had been done in the past. Law and ethics recognize that an individual's right to privacy may, in certain circumstances, be diminished or forfeited by others acting on behalf of the public good. Sometimes the circumstances for the public good are short-lived, yet the effects of diminished or forfeited privacy may be long term. I believe the ethical onus on all of us is to minimize these long-term effects if the argument in favor of the public good is no longer valid or defendable.
In this case, the media may have had merit in publishing the names of the victims because of the argument in favor of the public good, however, thatargument is no longer valid or defendable. Therefore, I believe the use of the victims' names in the book is not necessary for the public good and therefore, the authors have an ethical obligation to minimize the long-term effects of that original disclosure by not engaging in its continuance. I would agree with seeking permission from the next of kin if the public good was still at issue.
How names got into the public domain is not the issue, what is important in identifying deceased patients is whether their families will be upset. Obtaining consent from the next of kin is therefore the best method.
One might also ask whether it is necessary to name the patients at all—(I'm not sure I agree that a historical account must include their names)? The convention of using initials has long passed, as well, in my experience. I also think, realistically, that once the information is in the public domain, it's pretty much fair game. This question has occasionally arisen in my newswriting work for The Lancet (usually involving celebrities, or high-profile legal cases; others included the recent triple-transplant case at Hopkins, and the case of a minor whose father wanted to draw attention to an experimental treatment for a rare disease). We do not always agree on this among ourselves, but my usual position is only to use patients' names if they have already been identified in the media.
I would argue, in descending order of preference, that the highest ethical course is to obtain consent from the families; to use a convention other than names or initials to identify them; or to use their names as long as they have already been made public.
I would agree with the view that if the authors feel that it is absolutely necessary to name the patients they should get consent from the next of kin. Alternatively, they could avoid naming the patients and refer to the original source where the patients have been named and still achieve the purpose of providing an accurate documentation of the "official" history.