220 ETHICS OF RESEARCH PUBLISHING J Med Ethics: first published as 10.1136/jme.29.4.220 on 20 August 2003. Downloaded from Confidentiality and the ethics of medical ethics W A Rogers, H Draper ............................................................................................................................. J Med Ethics 2003;29:220–224 See end of article for authors’ affiliations ....................... Correspondence to: Dr H Draper, Centre for Biomedical Ethics, Department of Primary Care, Primary care In this paper we consider the use of cases in medical ethics research and teaching. To date, there has Building, University of been little discussion about the consent or confidentiality requirements that ought to govern the use of Birmingham, Edgbaston, cases in these areas. This is in marked contrast to the requirements for consent to publish cases in clini- Birmingham B15 2TT, UK; [email protected] cal journals, or to use personal information in research. There are a number of reasons why it might be difficult to obtain consent to use cases in ethics. Many cases concern people who are incompetent, and Revised version received thus unable to give consent. Often the material is of a sensitive nature, it is not clear who should give 18 September 2002 Accepted for publication consent, or the ethicist has no access to those involved. We argue that the use of cases in ethics 30 September 2002 research and teaching can be justified by appeal to the public interest argument, and suggest a number ....................... of areas for discussion and clarification. thicists tend to rely heavily on case studies both in regarding consent from patients as a prerequisite to the publi- research publications and teaching. Such cases are most cation of case studies. This is in contrast to many mainstream Evaluable where they draw attention to new or emerging medical journals which now require the written consent of issues in medical ethics, as these can challenge the limits of patients before accepting case studies for publication. (See current ethical practice, preparing undergraduates and practi- table 1) tioners alike for decisions they may have to make in the We reviewed all issues of the JME published between 1982 future. Examples include the discussions initiated by elective and February 2002, focusing on two particular series of reduction of twin pregnancies,1 preimplantation selection of articles: “At the coal face” and “Case conference”, both of genetically compatible fetuses to act as donors for existing which tend to discuss case material. We excluded those siblings,2 and the unexpected death of a research participant.3 articles that did not discuss personal information, and where The implications and limits of current ethical theory can be an article used more than one case, each case was documented http://jme.bmj.com/ explored through the analysis and discussion of such cases, separately. We wanted to know, rough and readily, how often making important contributions for health professionals and consent was obtained and/or documented, whether the case ethicists alike. For teaching, case studies offer vivid and was anonymised, and what kind of barriers to consent were dramatic examples of what might otherwise seem like dry present, such as the patient being incompetent or deceased, or theoretical problems. Despite some reservations, the use of the case involving more than one person. The results are cases for teaching medical ethics is widespread.45 Cases that shown in table 2. illustrate good practice can be the backbone of thoughtful teaching, but sometimes there is a temptation to favour the on September 28, 2021 by guest. Protected copyright. 6 dramatic in order to capture the interest of students. ANONYMISING ETHICS CASES Some of the landmark case studies used in ethics come The prevailing, albeit largely unspoken convention is for ethi- from the public arena, often after a court case, such as the cists automatically to anonymise case material in recognition recent case of Ms B requesting discontinuation of her of the importance of medical confidentiality, although this 7 treatment with a ventilator. At least some of the source mate- was documented in only four out of 31 cases reviewed above rial for these cases comes, however, from the information dis- (see table 2). But there are problems with this practice. closed to ethicists by clinicians, either seeking advice about Personal details are often central to the ethical issues of the real patients currently under their care, or presented out of case. The patient’s age, ethnicity, family background, gender, interest. It seems natural for an ethicist to suggest that novel and occupation may all be as important as their specific medi- cases are “written up” with the clinician. This material also cal details. For example, our thoughts about paternalism and works its way into lectures and seminars, for it is almost autonomy in a specific case may well be influenced by impossible not to use new and interesting material that has information about the gender, ethnicity, and occupations of come to the ethicist’s attention. those involved. The importance of these contextual details Given that the use of case studies is both integral to the means they cannot easily be removed from the case or work of medical ethicists and widespread, it is worth asking changed in any substantial way in order to protect the identity whether the use of cases in medical ethics research and teach- of the patient. If they were, the case might simply no longer be ing breaches confidentiality, whether these breaches can be noteworthy. In some cases, it may be possible to change justified, and what conventions might govern their use in details, but it is not clear how many details need to be changed research publication and teaching. to preserve anonymity. The current view of some medical edi- tors is that it is impossible to guarantee anonymity simply by THE CURRENT SITUATION making some changes to the details of the case, and there have We checked the information for authors on the websites of been instances of patients recognising themselves and several medical ethics journals and found no instructions complaining.10 www.jmedethics.com Confidentiality and the ethics of medical ethics 221 Table 1 Major journals and their requirements for consent and/or anonymisation J Med Ethics: first published as 10.1136/jme.29.4.220 on 20 August 2003. Downloaded from Journal title Instructions to authors re consent* Instructions to authors re anonymisation* Ethics Journals Bioethics No instructions No instructions Hastings Center Report No instructions No instructions Journal of Clinical Ethics No instructions No instructions Journal of Medical Ethics No instructions No instructions Kennedy Institute of Ethics Journal No instructions No instructions General Medical Journals Archives of Internal Medicine No instructions for case studies. Anonymise by assigning numbers or fictional Written consent required for clinical images. names to patients. BMJ Written consent required if “any chance patient may be Withhold names, patient details not to be identified”. changed to try to disguise them. Patient to view manuscript prior to publication. Patients to understand that complete anonymity cannot be guaranteed. JAMA Written consent required from patients who can be identified in No instructions written descriptions, photographs, or pedigrees. Patient to view manuscript prior to publication. The Lancet Written consent required for all case studies. Withhold names. Patient to view manuscript prior to publication. Patients to understand that complete anonymity cannot be guaranteed. New England Journal of Medicine No instructions but links to website of International Committee of See box 1 Medical Journal Editors displaying the Uniform Requirements for Manuscripts Submitted to Biomedical journals. *Information obtained from the “Instructions for authors” section on the website of each journal.8 It seems likely that, despite our best intentions, it is possi- irreversible interventions that could wait until the child was ble that patients could be identified, either by themselves or by able to decide for him/herself at a later date. Since the publi- someone who knows them, through the cases that are used for cation of a case study is not in the medical best interests of the teaching and publication. child concerned, and since once in the public domain the information cannot be recalled, it would seem most ethical to OBSTACLES TO GAINING CONSENT wait until the child reaches majority so as to permit her to One obvious solution to this issue is for ethicists to gain the consent for herself. By this time, however, the case study will consent of patients before publishing any information about be out of date. This is obviously a problem for paediatric medi- patients or using this information in teaching. But there are cine case studies and one that has not yet been addressed. problems with this suggestion. The first and most urgent is Competent patients may not wish to consent to publication that at least some of the patients featured in cases studies are of their cases, as by their very nature, cases of ethical interest not competent to give consent; eleven out of 31 in our series. tend to be about sensitive issues, about problems in the http://jme.bmj.com/ In our experience this is a problem that is already hindering doctor/patient relationship, or about accidents or mishaps. It is the publication of valuable case studies in disability studies hard to imagine, for example, how an ethicist could gain per- and psychiatry. It is hardly in the best interests of the patients mission from a couple to write about misattributed paternity concerned for this information to be published and in the case discovered accidentally through genetic testing when there is of incompetent adults, there is no one who can give consent on no consensus as to whether the couple themselves should be 11 their behalf.