When bioethicists speak about the ethics of medical interventions, they tend to

Transcription

1 Obligations and Accountability in International Public Health Stephen R. Latham, JD, PhD Professor of Law and Director, Center for Health Law & Policy Quinnipiac University School of Law When bioethicists speak about the ethics of medical interventions, they tend to stress two main ideas: respect for patient autonomy, and patients rights. The notion of respect for autonomy, of course, is among the most famous of bioethics buzz-phrases. This originally Kantian notion was prominently introduced into the bioethics field by the Belmont Report on research on human subjects 1 in the 1970s, and was firmly established as one of four central principles of bioethics by the leading text in American bioethics 2. Even among those four principles autonomy, non-maleficence, beneficence, and justice (the so-called Georgetown mantra ) the principle of respect for autonomy has been pushed to prominence. The joke is that when a bioethicist goes to remember the four principles, he says, Well, let s see. There s autonomy, autonomy um, autonomy and I forget the other one! Discussion of bedside bioethics has focused largely on autonomy conceived of as patient choice from among a selection of options offered by the system. Roughly speaking, one is thought to be enhancing patient autonomy if one describes to the patient, in language he or she can understand, the array of medical choices available including the choice not to undergo any medical intervention and then allows the patient to make the selection according to his or her own values and priorities. Note that this choice 1 Nat l Comm n for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. April 18, Beauchamp & Childress, Principles of Biomedical Ethics (New York: Oxford University Press), 5 th ed

2 2 view of autonomy is not the Kantian notion of autonomy it says nothing, for example, about the proper grounds for autonomous choices. Autonomy, though, plays a much less decisive role in bioethicists discussions about public health. Historically, the ethical discourse of public health stressed considerations of justice and distribution over those of autonomy; this, I suppose, is partly because public health involves analysis at the level of populations rather than of (autonomous) individuals. There was a great deal of serious and excellent work done on justice in the public health arena a decade ago. More recently, though, the public health ethics debate has been hijacked by world events. Larry Gostin s model public health act, for example, has been widely criticized for promulgating a state-centered command-andcontrol model of public health, with less local participation and information than its critics desire. That debate, obviously, has been informed by the events of 9/11 and by the anthrax scare. Where earlier we thought of public health as disease eradication, we are increasingly tempted to think of it as crisis and terror management. The contemporary public health ethics agenda is about the proper way to conduct sudden interventions to take care of bioterror attacks or perhaps to take care of people in the wake of fires, storms and earthquakes. That kind of crisis management often requires states to use their coercive power: to quarantine, to evacuate threatened regions, to inoculate. The bioethics debate has focused on how and where to set the limits of that state power. States, classically, have a monopoly on coercion within their borders that s Weber s definition of the modern state. But of course states do not have a monopoly on resources expended in public health, and traditionally don t have much power to coerce beyond their own borders. This means that the even the post-9/11 ethics vocabulary

3 3 about the limits of the state s coercive power hasn t translated well to the international public health arena, where the resources are mostly in the hands of trans- and supra-state actors such as NGOs, corporations, and foundations. When they do fund public health efforts abroad, states generally do so with an eye toward furthering some concrete interest of their own: an interest in keeping diseases from crossing their borders or from creating political or market chaos; an interest in cultivating a certain kind of image; an interest in trading aid for access to markets. But we lack, in bioethics, a non-statist vocabulary with which to talk about the ethical constraints on public health interventions abroad. (The philosopher Onora O Neill has written an excellent paper about this, to which this presentation is heavily indebted 3.) We might think that, rather than trying to frame the international public health debate on notions of individual autonomy, we would do better to think in terms of human rights. The problem with rights discourse, though as O Neill points out is that rights imply correlative duties. Think about a classic human right, e.g., the right not to be tortured. Such a right involves indeed, is defined by a correlative duty imposed upon all others to refrain from torturing. This is the structure of most so-called negative rights rights to be free from coercion or fraud, rights not to be imprisoned without charge, rights not to be tortured and so on. They depend upon correlative obligations, shared by everyone in the world, to refrain from doing various evil things. But there are other kinds of rights positive rights that seem to have a different structure. Rather than simply imposing obligations on everyone to refrain from doing evil, they seem to impose duties upon particular people to affirmatively go out and do good. Rights to due 3 Onora O Neill, Public Health or Clinical Ethics: Thinking Beyond Borders, 16 Ethics & International Affairs 2, (2002).

4 4 process can be like this, and of course rights to health care are like this. If a person has a right to health care, it s not enough for all of us simply to refrain from interfering in that person s life; instead, someone with the relevant skills and resources has to go out and supply the person with the healthcare to which they are entitled by right. Who has the obligation to be that supplier? Normally, we think of states as having that obligation, of being the bearers of the duties that correlate to positive rights. Yet, as was mentioned before, we see a large number of non-state actors providing public health services. We need to think further about the roles of non-state institutions in delivery public health services. What might be the source of an obligation for a non-state entity to engage in public health work? And what kinds of limits might there be on the conduct of such work? First, as to the source of obligation: how do we commonly generate obligations to help others in ethical theory? In the Anglo-American tradition of law and ethics, we don t recognize many duties to go of our way to assist others, particularly if those others are strangers. If they re not family, if they re not in a community relationship with us, we don t generally have duties to assist them. One major exception is that if it s our own actions that have put them in harm s way, we often do acquire a duty to rescue, to remove them from the danger to which we ve exposed them. I normally have no duty to leap into the pond to save the drowning stranger but if the stranger is drowning because I knocked him into the pond, I do have such a duty. Now, that may be one way to generate a sense of international public-health obligation that may run to some of the non-state transnational actors we ve been talking about. To the extent that their own practices have created problems, they may have acquired obligations to attempt to remedy those

5 5 problems. We may think about the difficulties that Shell Oil had a few years ago in Nigeria: they were accused of having contributed to human rights violations and to the environmental degradation of some of the regions in which they operate. To the extent that they are culpable for creating some of these problems, that culpability may give rise to a duty to rescue and repair. There is another method by which we might generate more general duties of assistance that could run to private parties in the international health context. In the early 1970s a team of business-ethics writers came up with what they called The Kew Gardens Principles to explain when a private party whether a person or a firm might acquire a duty to assist a stranger 4. (The name Kew Gardens Principles was a reference to the famous murder of Kitty Genovese in the Kew Gardens apartments in New York; thirty-eight people witnessed her slow murder and did nothing.) They concluded that 1) where a person is in critical need; and 2) a party is sufficiently proximate to the person in need to be aware of the need and to be able to act to address it; and where 3) the proximate party is actually capable of assisting; and 4) where assistance from others is not forthcoming, then the party has a positive moral duty to help the person in need. The theme here is basically that, in the proper circumstances, great need can give rise to obligations in others. We can easily see how this might work in the international public health context, where great needs are obvious everywhere; where private parties, corporations and NGOs are aware of, and have the ability to assist in addressing, those needs; and where assistance from other actors local governments, for example is not forthcoming. 4 John G. Simon, Charles W. Powers and Jon P. Gunnemann, The Responsibilities of Corporations and Their Owners, in The Ethical Investor: Universities and Corporate Responsibility (New Haven: Yale University Press, 1972).

6 6 So, we can think of ways in which private organizations might acquire obligations to assist in international public health. What about the ethical limits on their assistance? (Here I am referring back to some comments I made in my brief oral presentation this morning.) An advantage to finding that NGOs and corporations can have duties to assist in global public health efforts is that those entities can pursue public health problems across borders fairly freely, and are not constrained by state interests. A disadvantage is that most of those organizations are not democratically governed, and don t have built-in accountability mechanisms. Their governance is not particularly transparent. Even those that are of tremendous goodwill are only transparent to the extent that they deliberately choose to be so and many of them have decided not to be. There s a worry in the administrative law world that accountability, transparency and democratic process are vanishing in two different directions 5. On the one hand, decisions are being made by non-elected global bodies sometimes firms, sometimes global organizations like the WTO. Think, for example, about the recent headline issue of steel tariffs. If you don t like what the WTO has done to eliminate our steel tariffs, whom do you vote against? There is no one. (If you didn t like the original tariffs themselves, of course, you could have voted against President Bush.) Again, if you don t like the way we re doing agricultural subsidies, you can vote against Bush; but if they re abolished by the WTO there is no one to hold politically accountable. There are a number of decisions that are disappearing up into unaccountability at the global level, because they are being made within bodies that are neither democratically responsive nor transparent. On the other hand, another set of decisions is being pushed down into 5 See, e.g., Martin Shapiro, Administrative Law Unbounded: Reflections on Government and Governance, 8 Indiana Journal of Global Legal Studies, (Spring 2001).

7 7 unaccountability at the local level. Earlier today, for example, Carl Taylor mentioned, approvingly, the idea of having Institutional Review Boards (IRBs) for lots of different functions beyond research on human subjects. But that is, in fact, an example of the way in which accountability and transparency are disappearing in the downward direction. We re increasingly involving ourselves in negotiating the content of regulations with the industries being regulated; and with passing regulations which, instead of specifying what s allowed to go forward, specify a process by which affected parties will determine for themselves what s allowed to go forward, with minimal mechanisms for central accounting, for uniformity, for transparency. Think of IRBs: most people who enroll in a study never hear that an IRB looked at the study, have no idea who the IRB members are or what standards they operate under, and have never had an opportunity to help choose who the members of an IRB are. And IRBs don t report to one another or work with one another to set up uniform standards. Transparency and accountability vanish into local governance for which no elected person or body is directly responsible. Thus we have transnational decisionmakers on the one hand and local, voluntary, participatory bodies on the other, and though each has a lot of virtues, neither is particularly accountable or representative. I am tempted, now, to map these brief comments onto our keynote speakers addresses of this morning: Peter Goldmark remarked on the transnational flexibility and responsiveness and inventiveness of international foundations, but also remarked pointed that the accountability of those foundations is not and should not be to any oversight body, but to the health of our children. Carl Taylor several times made remarks about starting his locally-based, participatory public health team projects before the government noticed, and about

8 8 coming in under the government s radar screen. These remarks might stand, roughly, for the worry that, thanks to the involvement of NGOs and foundations in global public health, important public health decisions are being made both above the level of democratically accountable governments, and below it. To summarize: there are a number of international actors who, on some philosophical views, might have a duty because of their ability and understanding and resources, to help those in need. But in many cases their approaches seem to lack important political features: visibility of the organizational structure, accountability to the people affected by their decisions features that we normally associate with the mainstream political process. Whom can you blame if it doesn t come out right? Who s in charge here? Who s responsible for having set things up this way? These are important questions some of the most important questions of political theory. And in the area of international public health, answers to these important questions will not be forthcoming as long as foundations fly above politics, or sneak in below it.