The Opinions of the Ethics Committee on The Principles of Medical Ethics
Continued from Commentary on Opinions of APA Ethics Committee IV where I reviewed opinions related to uses or publication of psychiatric case information which seem to require the ethical psychiatrist to obtain patient authorization for release of information unless the information is disguised. The committee also asserts that "the problem of disguising cases is not always easily resolved" and that consent for release should be "freely" given, but that "there is no way to assure that the patient does not feel coerced into giving consent." This detour into a case I filed addresses these apparent contradictions.
In September of 2008 I submitted an ethics complaint related to three psychiatrists whose cases were described in an article published in the NY Times, to the New York District Branch of the American Psychiatric Association. In my letter I pointed out that the article included no indication that the cases were fiction or even disguised, and in fact the NY Times is known for carefully confirming the veracity of information contained in articles. Neither was there any indication that patients described had consented to publication of their cases.
After more than a year passed without a determination I asked about the status of the investigation. I received a letter from the District Branch Ethics Chair, Henry Weinstein, MD, dated November 10, 2009 indicating that the committee had deliberated and "acted accordingly" but could not tell me "either the processes or the substance" of the committee's work. However, the committee was more forthcoming with the NY Times. In an enclosed letter dated October 15, 2009 addressed to the Public Editor a Dr. Kevin Kelly wrote on behalf of the NYDB that the named psychiatrists "were scrupulous about either obtaining consent from their patients before publication or disguising the material in such a way that the patients could not be identified." The letter went on to express concern that lay readers might not understand that consent must have been obtained, and that this might lead them to "avoid needed treatment." The letter concluded that a psychiatrist should only allow such material to be published or to write an article including such material if a statement that the material was disguised or that the patient consented accompanies the article.
In spite of the above the Oct. 20, 2009 New York Times included an article by psychiatrist Richard Friedman, When Parents Are Too Toxic to Tolerate, describing two cases in which he struggled, apparently in his role as a psychotherapist, with how to handle the dilemma some of us face in deciding whether (or how much) to distance ourselves emotionally from troublesome parents. As in the former article this article contains no mention that the author disguised the cases or that the author obtained authorization for publication, freely or otherwise, from his patients or the several other individuals mentioned.
Did I expect the NY Times to, "Stop the presses!" to make sure the more recent article would conform to the NYDB letter's requests? Not really. The NY Times has no obligation to comply with ethical guidelines suggested by NYCDB, or even APA. Journalistic ethics no doubt apply. Although the letter to the Times was a nice gesture it was Dr. Friedman was responsible for compliance. Furthermore, the Time represents only one of thousands of publishing organizations who could potentially impact the problem.
The NYDB ethics committee disappointed me, though. Having served on the ethics committee of a state psychiatric association myself I have some familiarity with the procedures. For the committee to provide information about the determination to a public newspaper while withholding it from the complainant defies belief. Also, I have understood that Ethics complaint procedures require the local committee to indicate in the final letter that the complainant can appeal the determination to the APA committee. In this case the committee informed me neither of a determination nor of the right to appeal. I wrote (December 11, 2009) both Dr. Weinstein and the APA ethics committee indicating I wanted to appeal the determination as expressed to the NY Times, pointing out that neither of the letters mentioned whether the committee considered the issue of whether it is possible to obtain freely given informed consent for such an endeavor (which is unlikely to benefit the patient at all) or attempted to address the question of what might constitute adequate disguise of such information.
Having never received even an acknowledgment of either letter from APA or NYCDB I contacted APA to inquire as to the status of the case. In an email communication from APA dated February 11, 2010 (two months after my letter) I was informed that APA had requested the case file for review by APA Ethics Committee. For a response to my question about adequate disguise I was referred to the British Journal of Psychiatry Instructions for Authors (viewed 2.16.2010):
"If an individual is described, his or her consent must be obtained and submitted with the manuscript. Our consent form can be downloaded here. The individual should read the report before submission. Where the individual is not able to give informed consent, it should be obtained from a legal representative or other authorised person. If it is not possible for informed consent to be obtained, the report can be published only if all details that would enable any reader (including the individual or anyone else) to identify the person are omitted. Merely altering some details, such as age and location, is not sufficient to ensure that a person's confidentiality is maintained."
I might wish the NY Times would adopt such a policy, but there are a number of problems with BMJ's approach, not the least of which is that by providing a copy of the consent the psychiatrist reveals the identity of the patient to the publisher. The suggestion that the patient read the report before submission raises further questions. Can the psychiatrist presume that the patient possesses the necessary skill, knowledge and judgment to assess the potential for damage? Will this task take away time from a psychotherapy session for which the patient must pay? Will the psychiatrist attribute some kind of therapeutic value to the exercise? Will the patient feel pressured to give consent to please her physician? The BMJ guideline suggests use of disguise only if "it is not possible for informed consent to be obtained." But this could include situations in which the patient refuses to consent. What then? The guideline does provide a standard for judging adequacy of disguise, but how can we apply this standard? I confess that I cannot offer a better solution.
As for my letter to the NYCDB, as yet I have received no acknowledgment.
For myself I lean toward the practice of fabricating all cases for publication and clearly stating that the cases are fabricated. Because I do not believe that patients possess the capacity to give truly informed consent or that consent can be freely given, to release information that will not benefit the patient in any way, I believe no patient should be burdened with a request for consent to publish.
In the next installment I address opinions related to role conflicts: Commentary on Opinions of APA Ethics Committee VI