JRSM >
Volume 96, Number 7 >
Pp. 364-365
Book of the Month |
Shute Hill, Malborough, Devon TQ7 3SF, UK
In the Wake of Terror1 is a book to be read by any subscriber to the Journal who wishes to get a glimpse of what has happened to the United States since the events of September 2001. Despite being written in the immediate aftermath of those events (the book was 'put to bed' in the spring of 2002), and despite limiting its scope to medicine, this collection paints an alarming picture of how readily our human rights might be put aside in the name of the public good.
With the events of 11 September 2001 and the subsequent dissemination of anthrax spores across the USA the world changed in significant ways. Our daily lives may not have altered much, but most of us see the world differently and perhaps we wonder how we might act if caught up in a similar catastrophe. And for many 'what would we do?' rapidly runs into the moral question 'what ought we to do, both individually and collectively?' Jonathan Moreno's latest book is an early attempt to ask if, and if so how, medicine and morality have changed in this time of crisis. It is a book performing both the essential functions of medical ethics2—helping us to right thinking about how values change in a changing world and, one hopes, helping us to right action. (His subtitle refers to morality, but I prefer the term ethics, synonymous but carrying less theological baggage.)
First a necessarily brief description of the book itself whose editor heads the Center for Biomedical Ethics at the University of Virginia. Two things must be acknowledged at the outset: first, that the collection deals with the problems of terrorism principally from an American perspective, and second that its authors' remit excluded consideration of what Richard Horton2 has called the principles of harm reduction, i.e. prevention. The book's seventeen contributors cover in varying detail five general topics from both theoretical and practical standpoints. The first and longest section considers issues of public health: how medicine and society have dealt with medical crisis, especially wartime crisis, in the past (Jonathan Moreno; Paul Lombardo); what emergency powers ought and are to be accrued by governments (James Hodge and Lawrence Gostin); and what implications these have both for individual human rights (George Annas) and for public health as an ideology (Ronald Bayer and James Colgrove). The second section considers issues of resource allocation and particularly of allocation in the face of massive demand (James Childress; Kenneth Kipnis). The third considers how the roles of various health professionals necessarily change in response to major challenge (Lisa Eckenwiler) and how this will probably alter both the professional and the political environment in which they work (Griffin Trotter). Section four turns to the obligations of the pharmaceutical industry and shows how its traditional freedom from interference has already been reduced (Evan DeRenzo) and returns to consider how the organization of health care in the USA is likely to be affected (Ann Mills; Patricia Werhane). The final section considers the implications for research involving victims of terror, particularly the inadequacy of current regulations in protecting them (Alan Fleischman; Emily Wood), and the challenges for medicine and society posed by our capacity to make genetically modified biological agents and materials (Eric Meslin).
There is much of great interest in this collection. Not all is brand new; James Childress, for example, has written elegantly about triage in the past. Some is concerned primarily with history, as is Paul Lombardo's fascinating demonstration of how easily accepted was the Second World War research into hepatitis conducted at the erstwhile Virginia Colony for the Epileptic and the Feebleminded. But the book is none the worse for that. Some chapters present factual groundwork. For example, Kenneth Kipnis' laying out of what a hospital can and cannot do when facing a disaster-level event such as the Tokyo subway poisoning, let alone a catastrophe-level one such as Hiroshima or Bhopal (or as might have occurred at the Twin Towers if greater numbers had survived their fall) is highly instructive. So is Griffin Trotter's demonstration of how a law passed by a well-meaning Congress wishing to guarantee emergency healthcare to the poor has resulted in A&E departments being legally forbidden from conducting just the kind of triage-and-transfer policy necessary in times of disaster. And some contributors, it must be said, tread a rather narrow path, such as Evan DeRenzo's recommendations for the pharmaceutical industry or those of Alan Fleischman and Emily Wood on human research.
Much of the book, however, revolves around the question that should perhaps be of the greatest interest to JRSM readers—to what extent ought concern for the public good override individual liberties? Not a new question, but one highly relevant in the UK at a time of marked public distrust, when voices inside and out of Parliament are recommending a more authoritarian approach to a possible epidemic of severe acute respiratory syndrome (SARS), and when the newly formed Health Protection Agency has already heard concern that the existing balance between personal freedom and the measures needed to overcome threat is inappropriate in today's world.3
The US response has been the Model State Emergency Health Powers Act rushed forward in the immediate aftermath of September 2001.4 Because public health law in the USA is currently a matter for the individual states, and because laws vary greatly, the Model Act aims to provide a common framework for the fifty states to use in replacing existing legislation. The Act is premised upon the view that respect for the rights of individuals must yield in order to safeguard the health and needs of persons in the community, and aims to provide public health authorities, subject to limited restrictions, with whatever powers may be necessary to respond to catastrophic emergencies specifically including but not limited to bioterrorism. Among other things, the Act would require the collection and reporting of data relevant to any of the biological or chemical agents identified by the Centers for Disease Control and Prevention (CDC), remove any hindrance to the wide distribution of medical information among agencies and officials, and authorize the use of coercive powers over both persons and property. In this book the Act is vigorously defended by its principal proponents, Lawrence Gostin and James Hodge.
The real question, however, is whether the sacrifice of human rights and the setting aside of the most fundamental principle of medical ethics, respect for patient autonomy, will in fact provide substantially greater security. The case against is argued persuasively in this collection by George Annas and by Ronald Bayer and James Colgrove (and peripherally by others). It may be summarized as follows. First, a nation's response to bioterrorism cannot be effective on a regional basis and in any case the national government already has the power to act by executive order. Second, the Act's proposals are contrary to constitutional law, especially as regards the rights of patients to refuse treatment and the obligations precluding doctors from treating patients against their will. Third, quarantine, the Act's central proposal, is widely regarded as being ineffective5 or even counterproductive6,7 in the settings envisaged. Fourth, coercion simply will not work. Rather we need to overcome widespread distrust by means of public participation and consent. Fifth, there is a distinct likelihood that the states' coercive powers would be extended beyond the area for which they are being proposed—think of the hysteria generated in the past by the appearance of AIDS or today by SARS. (The example of SARS is instructive. Its greatest impact has been in one of the most coercive and secretive of societies.) And sixth, it is not the forced commandeering of hospitals and staff that is needed, but rather a total rethinking of how, where and by whom disaster-level care is best provided.
After a slow start, the months following the proposal of Gostin et al. saw widespread criticism from professional bodies, academics and civil rights advocates, and political opposition from both the liberal left and the libertarian right. So much so that in its final form the Act's authors include the remarkable disclaimer that their views do not represent those of their own institution, of the Centers for Disease Control which funds the institution, nor of a host of other named and unnamed governmental and non-governmental agencies and organizations. (The earlier published version claimed that the Act was being prepared for and in collaboration with just these agencies.4) Despite this, and no doubt partly because one billion dollars has been made available for emergency preparedness, the Act has been adopted, albeit mostly in part, by three-quarters of the states. In the light of this there is some slight justification in its principal authors concluding that 'the debate between protecting the public health and individual rights has [now] shifted to state and local government'.
Could it happen here? Well, not in exactly the same way, of course. We are not likely to see so dedicated a right-winger as Home Secretary as is John Ashcroft as Attorney General, and political opinion here would likely be more diverse. But if public trust is the key to effective public health actions, and if openness, public participation and consent are essential components of public trust, we should not be too sanguine.
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