Do as I say, not as I do: Why bioethicists should seek informed consent for some case studies.

In 1993, The British Journal of Psychiatry published a medical case study that resulted in a disciplinary hearing against the authors who had submitted it for publication. While the relationship between eating disorders and self-mutilation is well recognized, "Blood-Letting in Bulimia Nervosa" reported three cases of a novel form of self-mutilation: deliberate blood-letting by venipuncture or insertion of intravenous cannulae. The patients' names or initials were not revealed, but other potentially identifying information was. One of the patients, "Ms C," was described as "a 26-year-old pre-registration doctor," and important details about the patients' histories and symptoms were included. (1) The case noted, for example, that "Ms C states that she was sexually abused by her father between the ages of 4 and 13 but the authenticity of this claim is in doubt." The professional affiliation of the authors was noted, and a third physician was acknowledged for allowing the authors to report on one of his patients. The patient identified as Ms. C became aware of the report after its publication and filed a complaint against the physicians. A newspaper in the community where the physicians practiced reported on the article, and one of Ms. C's friends recognized her. (2) Ms. C acknowledged giving verbal consent to have certain details of her condition used for research, but she objected that her identity was not disguised and that the facts were inaccurate. The General Medical Council, the body that regulates British doctors, considered charges of serious professional misconduct. The physicians contended that the patient had given verbal consent for the writing of a case report and that all the published details were highly pertinent. They were found not guilty. (3) I am not aware of a similar episode in medical ethics, but such an event would not necessarily have been publicized, and one certainly could have occurred. It would not have been difficult, for example, for neighbors or friends to identify the family involved in the so-called Johns Hopkins case. The film "Who Should Survive? One of the Choices on Our Conscience" depicts the death of a child with Down syndrome and duodenal atresia as the result of his or her parents' decision not to permit surgery. (4) This is an uncommon constellation of malformations affecting only 7.7 out of 100,000 live births. (5) Additionally, the hospital where the infant was cared for is identified several times during the film. Friends and neighbors could have recognized the family in the media coverage of the film's exhibition. (6) The family might have been angered by the way they were portrayed or otherwise harmed. The resident in the film states, "I talked to the father several times. He would call and say, 'How are things?' meaning 'Is the kid still alive?" (7) The father could have objected to this characterization of his question. Public reaction to the film was generally negative. Katherine McCloskey wrote to The [Baltimore] Sun, "To say that I, as a young mother, was deeply moved, indeed shocked, by your report is but a gross understatement. I was even more ashamed to admit to myself that I live in a society where such an event can occur." (8) If the parents were recognized, they could have been ostracized or explicitly criticized. Bioethicists should take the possibility of inadvertently disclosing the identity of the subject of a case study seriously. While they have been concerned to protect the subjects of biomedical research, they have not considered the ethics of their own research. The subjects of case studies could be wronged by the violation of their confidentiality or harmed by stigmatization. Before publishing unique or detailed cases based on actual patients' care, bioethicists should seek the patients' informed consent. Access to Case Study Case study subjects recognizing themselves is a relatively new phenomenon caused by the widened circulation of medical information. …