My review will appear in Philosophy in Review
Neil C. Manson and Onora O'Neill: Rethinking Informed Consent in Bioethics. Cambridge: Cambridge University Press 2007. Pp. xiv + 212. US$ 24.95 (paperback ISBN-978-0-521-69747-7).
The concept of informed consent plays a central role in many areas of modern ethical and political thought, ranging from social contract theory to sexual ethics. Its prominence in the literature of bioethics has grown steadily through recent decades, having been the subject of over 1,800 articles in the year 2002-3 alone (1 footnote 1). In this book, M&O set out to defend the strikingly bold claim that current thinking about the role of informed consent in bioethics suffers from fundamental conceptual distortions whose pernicious influence begins in inadequate philosophical analysis and ends in wrongheaded bioethical policies.
The book opens with an historical account of how informed consent became an important issue for bioethics. The bioethical importance of informed consent was first officially recognized in the Nuremberg Code which was adopted after World War II in reaction to the revelation of atrocities committed by Nazi doctors in the name of medical research. Policies of informed consent developed for the regulation of research were soon applied to clinical settings, and official criteria for the determination of consent became increasingly stringent and eventually impracticable. Things have come to such ahead that one might wonder how a patient could grant sufficiently informed consent to a medical procedure unless he or she has first completed a medical degree and an internship in the relevant specialty! Ethical guidelines for researchers are also in danger of becoming unreasonably restrictive due to new concerns over the alleged obligation to gain the consent of the original research subjects each time data and tissue samples from one study are reused in subsequent projects. M&O feel that bioethics has reached an impasse: physicians and researchers are left to choose between "systematic hypocrisy" (25) – universal non-compliance with official standards for informed consent - and the paralyzing alternative of genuinely trying to apply impossibly demanding standards. M&O insist that only a revolution in our understanding of informed consent can deliver us from this dilemma.
M&O feel that the current impasse stems from inadequate conceptual analyses of what it means to inform someone and of why it can be important to gain their consent. According to the standard view, physicians and researchers are required to convey all relevant information to patients and experimental subjects. The latter exercise their moral autonomy by using that information in rationally choosing their preferred course of action. The standard view is based upon what M&O refer to as the "conduit" and "container" metaphors of information and communication. The physician knows certain things – she "contains" information and this information must be conveyed, as if through some kind of "conduit" to a new "container" – the patient. M&O argue that this kind of account leaves out many crucial aspects of communication, such as the fact that it is governed by norms, that it must be sensitive to the character of its audience, and that it involves an interaction undertaken taken by two active parties. Far from remaining an inert receptacle, a patient may respond to the physician's explanations and advice with skepticism or misunderstanding; the patient may also infer countless new conclusions from the information offered.
M&O are also worried that the standard view places misdirected emphasis on the roles played by the patient's autonomy and rational decision making. Moral autonomy is an important concern, but there is no reason to think that it always trumps all other factors, such as the physician's duty not to harm her patients. Patients are often simply in no position to work out rational cost-benefit solutions to questions regarding their treatment. At the end of the day, doctor-patient interactions must be founded upon intelligently placed trust, which itself depends on a workable system of accountability.
When discussing autonomy, M&O ask why it is that physicians and researchers seek to obtain informed consent to begin with. They claim that consent is required not because of some abstract respect for autonomy, but rather because the physician or researcher is proposing that the patient waive some obligation (such as the obligation upon people not to cut each other) in order for some medical procedure to be performed (such as surgery). Different procedures involve the waiving of different obligations; the performance of open heart surgery, for instance, requires a different standard of consent than does checking a pulse. M&O learn from all this that current attempts to set up ever more stringent and uniform standards for informed consent should be replaced with a more flexible policy "that focuses on the obligations and expectations to be waived, and the reasons for waiving them in specific cases" (190).
M&O are not only concerned with informed consent relating to the performance of medical procedures and the like; they also discuss informational privacy, data protection, and the need to gain consent for the sharing of medical information. They do not think it is particularly useful develop different standards relating to different categories of information (such as "private" and "public"); the usefulness of such categories for ethics breaks down under scrutiny. M&O devote an entire chapter to explaining why the category of "genetic information" does not deserve the special attention it has received from bioethicists and lawmakers. Instead of worrying about the kind of information involved, they want us to think about what people are doing with the information in question and "give due attention to the variety of reasons why certain types of action by which we acquire, hold, use, disclose or communicate information may be impermissible and others entirely permissible" (110).
This book certainly makes an important contribution to bioethics, and its conceptual subtlety can hardly be reflected in a short review. It does, however, suffer from one rather unfortunate shortcoming. Although the book includes extensive discussion of some bioethical legislation (in particular, the UK's Data Protection Act 1998 and the USA's proposed Draft Genetic Privacy Act), it contains almost no discussion or mention of relevant case studies. Such examples would make their arguments more easily understandable and also give a clearer idea of how M&O would apply their ideas to the real world. That, as well as the book's highly abstract tone, will make it a rather difficult read for the policy makers, physicians, and researchers whom it calls upon to begin rethinking informed consent in bioethics.