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Friday, November 17, 2006

Session 6: The Ethics of Health Care

Norman Daniels, Ph.D.
Mary B. Saltonstall Professor of Population Ethics and Professor of Ethics and Population Health, Department of Population and International Health, Harvard School of Public Health

DR. PELLEGRINO:  Our next speaker is Norman Daniels, whom all of you should know or have heard about on this subject.  He is the Mary Saltonstall Professor of Population Ethics and Professor of Ethics and Population Health, Harvard School of Public Health.  Few people are as well-published or well-read on this subject as Norman is.

We have asked him to address the question which has come out of the survey we made about topics the Council members might be interested in.  Dr. Daniels is going to make a presentation.  And then Dr. Dresser has agreed to open the discussion.  Thank you very, very much.

Norm, if you don't mind, the question is yours.

DR. DANIELS: Thank you.  It is a pleasure to be here.  And I thank you for asking me to talk about a topic that I have been thinking about for about 30 years.  It shows how slow progress is sometimes.

In any case, what I wanted to do today was to briefly address three questions.  I gave you in your paper background briefing book a paper that I had written about five or six, seven years ago now.

And I am in the process of just making the final revisions on a book called Just Health, which is a sequel to Just Healthcare.  And that book contained the core ideas about opportunity in health.

I will briefly touch on those, but I want to go into some issues that I think go beyond that and also have a bearing on the very general question that I was asked to address, what does a good society have to do about providing health care for its population?

Well, I'm not really sure I know what a good society is.  I'm assuming that a good society is at least a just one.  It may be more than that.  And so I want to actually answer the question, what does a just society owe its population in the way of the protection of health and promotion of health?

To get at that very general question, I want to answer three questions, why is health especially important?  When are health inequalities unjust or unfair?  And how can we meet health care needs fairly when we can't meet them all?

I think these are very central issues within any conception of distributive justice for health.  And I want to say at the very end of my comments just very briefly how I would unpack the concept of a right to health or health care using the answers to these questions.

So the first answer really draws on work that I did some 20.odd years ago, 25 years ago.  And I should add that in the other reading in your briefing book is the chapter from the President's Commission report in 1980 or '83.  It was drafted over that period of time.

And I worked closely with Dan Brock and Dan Wikler and later Allen Buchanan, who were the staff philosophers connected to Alex Capron's effort at that time.

They put together a supplementary volume to the Securing Access to Health Care report that contains philosophical essays on justice in health.  And there was the report of which you had a part.

I was asked to comment on it.  All I can say is, well, we haven't done much that they recommended in 30 years.  And it seems to me that that is the point to be addressed in some way or other in the outcome of what you do about this, not that there weren't efforts to try to do some things about what they recommended.

Okay.  So the fundamental intuition behind the answer to the first question is to draw a connection between the importance of health and the reason we give it a lot of prominence.  Often we can point to other countries where there is universal coverage and access to health care.

But I think if you actually look at the American system, despite its imperfections, very serious ones, and huge gaps in access to care, 45 million uninsured people, we still in principle carry out some of what might be thought as the principle underlying other countries' work, namely we think poverty should not stand in the way of access to health care.  And so we have a Medicaid system, imperfect as it is.  And we have Medicare as a universal coverage system for the elderly.

So if you take those two pieces together, you might draw out of them an implicit set of principles that would say, in effect, "We are recognizing the fundamental importance of giving universal access to health care."  But, of course, we have left out the near poor.  And that is a very significant gap of what we do.

Here what I am trying to get at are some of the ethical underpinnings for thinking that health care is special and ought to be treated in a special way within developed systems.  So the basic intuition is carried in this argument.

Disease and disability are departures from normal functioning.  I'm taking normal functioning to be equivalent to the notion of health, a lot of controversy about that, but I'm going to leave that aside.

The other premise of this argument is that departures from normal functioning or, let's say, significant ones, impair opportunity.  And what I have in mind — I'll show you in the next overhead — is the range of plans of life that people could reasonably choose to pick among given their talents and skills, were they otherwise healthy.  Okay?

So that's the conception of a normal opportunity range.  It is a socially relative notion in that different societies would have different ranges of opportunities open to people.  And it's relativized to people's capabilities in terms of talents and skills for entering different plans of life.

The idea is that across all that dispersion of talents and skills in a population, health interferes in a very systematic way or bad health interferes in a systematic way.  And that is the intuition underlying that premise.

So meeting health needs protects or promotes normal function.  And so the fundamental conclusion I drew from thinking about this was that if we wanted to look for a very general principle of justice that connected the importance of health to our overall concerns of justice, it might be a principle that protected fair equality of opportunity.  In our society, that is a very widely supported principle.

So I think there is a grip for this idea within American culture.  And the basic idea, then, is that if there is going to be something like a right to health care, it's a special case of a right to protection of opportunity in society.

And that is the core idea that I developed in an earlier book.  I think what is different about my thinking now is in the third bullet here, where I talk about meeting health needs.

When I first wrote Just Healthcare and published it over 20 years ago and the President's Commission in 1980 drew on the argument about opportunity in the chapter you read, I was largely thinking of health care as the primary determinant of health in a society.  And lack of access to health care would be the source of health inequalities in a society.  And the inadequacies in delivering the right kinds of health care to the population would be a way to characterize the failure to meet the needs, health needs, of a population.

I now have a very different and boarder picture of the social factors that affect health in a population.  Even in the earlier work, I was always thinking of public health measures as included among health care measures.  So clean water and so on were all in my mind health care.

As we will see as we go on, there is an even broader range of factors which affect population health and its distribution.  And these are often referred to as the social determinants of health.  So I'll say something about them shortly.

This is a little picture of that core idea about the opportunity range.  And so what I am suggesting is that a well-functioning effort in all dimensions to protect health for individuals will keep key individuals retaining what is in the blue circle, what I think of as an individual fair share of the range of plans of life that they have.

The red circle is the range of plans of life that's reasonable for everyone in a particular society to pursue, cutting across all the differences in talents and skills.  So it is the union in set theoretic terms of all the individual fair shares that might be present.

The green circle, just to characterize the difference, is an individual might decide to pursue certain of his or her capabilities or talents and skills, develop them extensively, and let others lie fallow.  And then one develops a particular subset of the individual fair share as the effect of opportunity range you're pursuing.

What we do in health care is we often give people a choice to use medical services, let's say, to restore functioning.  And part of what might drive their individual decision-making is their concerns about what is important to them given the effective share that they have.

What society has to adopt from a social perspective is keeping people functioning within the blue circle, normal functioning, because we don't want to in a sense lock people into previous choices about what they thought was important to them so that we would want medical services to restore normal functioning, regardless of how much of that an individual is intent on using.

So that basically draws a conceptual connection between health and opportunity and its importance.  What I have on this overhead is some possible grounds or sources for giving prominence to a principle that protected equality of opportunity because in a sense, my argument before simply appealed to the fact that a lot of people think opportunity is important.

But here are some systematic approaches within the theory of justice.  Where there is a strong effort to try to provide foundations for a principle of fair equality of opportunity in Rawls' case, that could be connected to intuition I had about the relationship between health and opportunity.

Rawls's contractarian theory generates three principles that he calls justice as fairness, the equal basic liberties of fair equality of opportunity principle; and a principle compressing the inequalities in income and wealth, making the worst-off ones as well-off as they could otherwise be, he calls the difference principle.

I am going to come back to that shortly.  And that's the reason I have for mentioning it now.  I am not trying to defend any one of these theories.  And the argument I am giving doesn't depend on defending any one of them.

What I did want to do is point out that several other lines of work, both of which are critical of Rawls in the last 30 years, also focus on opportunity.  Maybe we're using a slightly different terminology in Sen's case.

And I would draw extra support for the importance of connecting health to opportunity from the convergence of these three different views in this way on an opportunity space as being central to health care.

Sen's view is that what justice is concerned about; in particular, what we're concerned about when we're concerned about equality, is giving people access to an appropriate set of capabilities to do or be whatever they want to be.  Well, capability to do or be what you want is an exercisable life plan within the opportunity range.

So I see this as a terminological difference but conceptually very much the same sort of space that I had in mind.  We were sort of focusing on this idea independently but roughly at very much the same time:  1979-80.

I kept the opportunity language because I was trying to figure out how to extend Rawls.  And Sen was anxious to distance himself from Rawls in certain ways.  And so he had this capability space.  But I think they're talking about the same thing.

Somewhat later in the '80s, another theory came along.  This one, in contrast to Rawls and Sen, uses a welfarist view of well-being.  So we're thinking in terms of some sort of welfarist view, desire satisfaction perhaps, maybe an objective component thrown in by Jerry Cohen, advantage.  But the idea there is that opportunity for welfare is the core notion.

So the idea is that we are owed compensation by others for disadvantage or losses in welfare we may have relative to others if we have been denied the opportunity to develop a life with as comparable a welfare range as other people.  And so this is where the opportunity comes in.

So my point is that disease and disability, serious departures from normal functioning, would on all three of these views show up as significant impairments of either capabilities or opportunity for welfare or denials of fair equality of opportunity.

So I'm taking, trying to build on the idea there might be convergence across a range of theories of justice on the importance of opportunity space as something that justice has an importance focus to protect.  And I would say that this overall idea is very compatible with what a lot of people in the country think who talk about opportunity.

So that's the end of my comments on the first point about the special importance of health.  Health is of special importance because it has an impact on opportunity.

And we have social obligations to protect opportunity that can be defended from several different lines of theory.  Obviously not all theories of justice would give prominence to a notion of opportunity.  It wouldn't play a singular and distinct role within a utilitarian framework.  It might not be important within a libertarian framework.  But it is important for a broad range of other views that happened to coincide on that point with a lot of public views about opportunity.

Well, let me move on and say something about health inequalities.  This was the second question that I thought was a core question to address in thinking about justice and health.

Knowing that if you meet health needs, because they are of special importance, knowing that that is an important thing to do doesn't tell you exactly which health inequalities are unjust or unfair because it could be that in a just society, which allows for a range of inequalities of other sorts, there are going to be health inequalities that are permissible.  So which inequalities in health do we want to single out as unfair or unjust among all the inequalities we could observe?

Suppose we had a religious group that because it engaged in very safe sexual or dietary or exercise or whatever practices had much higher levels of health than other groups.  Would we say that the inequality that was generated by that behavior, assuming the other groups had reasonable access to good information about health practices and so on, would we say the inequality is unjust or unfair?  I don't think most of us would assume that or conclude that.

And so not all inequalities we see are likely to be ones that we denounce as unfair or unjust.  But there are some good examples that we would probably pick out that way, including perhaps many race disparities that we notice in the United States in health, even though the mechanisms underlying them are not completely clear.  And without a clear view of the mechanisms, we might not be able to pass a judgment about the injustice or unfairness of a particular inequality.  So we have a general task.  How do we figure out when inequalities are unjust or unfair?

Now, what I wanted to say is that this point does not loom as a core issue if one thinks health care is a primary determinant of health in a population because then if you think that's true, so that the inequalities we see in health are the result of inequalities in access to health care, then one has a very narrow picture and a very clear answer about when you think health inequality is unjust.  It is unjust whenever inequalities in access to health care generated the inequality that we're talking about.

But — and this is going to be a very important point — many health inequalities, maybe most of the ones we see, are not attributable simply to inequalities in access to health care.  And if that's true, we have a much different picture to address in our thinking about justice on this question.

So what I have picked out here derives from work that I did with two social epidemiologists about eight years ago, eight or nine years ago:  Bruce Kennedy and Ichiro Kawachi.  We were Robert Wood Johnson investigators together.  And I was caught up in a lot of their work on the social determinants of health.

And we together decided to think through what some of the implications of that would be for justice and health.  And that's where some of what I'm about to say next comes from.

What we know, these are sort of four general points that I think nobody would disagree with in the social science literature about social epidemiology.  There are observed socioeconomic gradients of health that vary with policy and are not simply dependent on the laws of development.

One way to illustrate that is — I had a graph, but your instruction said no more than 15 slides.  So I followed the rules.  Now you'll have to listen to me say what I could have shown you.

If you look at a slide that graphs on the vertical access life expectancy, say, by country and across the horizontal access, it graphs gross domestic product per capita, so we're looking at what's the impact of aggregate wealth in a population on life expectancy in that population, you get a curve rising sharply on the left and tapering off as it goes to richer and richer countries.

What this graph generally suggests to some people is that there is a definite impact of wealth on health, especially, say, in the low/middle-income range, below 5 or 6 thousand dollars Gross Domestic Product per capita.  Above that, the effect of wealth is very hard to detect.

But one of the striking features about this graph if you look at it carefully is that variation, even among very poor countries, overwhelms this effect of wealth on health in the aggregate.

So that you find very poor countries, like Cuba or like the Indian State of Kerala or like a middle-income country like Costa Rica, that have health outcomes that are on a par with advanced industrial countries or just about there.  At the same time, you have other poor, equally poor, countries whose life expectancy might be 30 years less than you find in the developed countries.

So wealth is not the decisive factor.  But coupled with policy, how to invest your wealth, for example, in Kerala, this is a state of India that has a matrilineal history of transmission of property.  It provided a fertile ground for not disempowering women, as they were in many other South Asian contexts.  And when a left wing government in Kerala started to emphasize the importance of investment in education, even for women, women were not excluded from this and there was a long cultural background to support it.

So there are historical accidents that provide a climate in which a social policy can take root.  And what the effect in Kerala is is something we have observed many places.

Literate women do a much better job of protecting the health of their young children and getting them health care that they need and getting them access to better opportunities, work, and other things later in life.

So this fundamental investment in human capital makes a difference.  And it has a huge impact on the distribution of health in a population.  So that's part of a way of illustrating the point about socioeconomic gradients not being matters of laws of development but varying with policy.

These gradients, I might add, operate across the socioeconomic spectrum.  So it's not simply a gap between poverty and non-poverty.  It has a big impact in middle-income ranges.

The steepness of the gradient is affected by the degrees of inequality in a society.  There is a raging controversy in the empirical literature about a thesis called "the relative income thesis."  I won't go into it unless you ask questions about it.  But it doesn't affect the main point that I'm trying to make.

The causal pathways are under investigation.  What we know is a lot of correlational literature about the importance of these determinants.  They're called determinants as if they're causal.  But what they really are are associations.

There is a book by Michael Marmot, which he is trying to attribute, a book called The Status Syndrome.  And he looks a lot at status differences of people in different work settings and otherwise.  And I'll show you a slide coming out of his work in a second.

In that, his basic picture is that the mechanism through which this works, through which a lot of the socioeconomic gradient works, is very ancient.  It goes back to the effect on immune systems of hierarchies, social hierarchies, which we can find among animals and others and so on.

So this is a particular causal hypothesis.  I'm not giving any credibility to it just by mentioning it.  I just want to show you this is what these hypotheses, these associational hypotheses, suggest as avenues to explore.

This is a slide from Marmot's work, a very famous picture.  This is the Whitehall study.  And the reason I mention this is it's very important for people to understand that this is done in Britain, universal health care.

All the civil servants talked about here are none of them poor.  They were all making a decent minimum income or better.  They all have basic educations.  They're all literate or more.  They have gone through British primary school and so on.

And what you see in the vertical columns above the bar, the horizontal bar, you see administrative and professional and executive levels with a much lower risk mortality rate than the worse-off groups who fall below the bar.

And if you draw a line of these bars, you have got the socioeconomic gradient of health in a part of a health system that has universal coverage and in which significant health inequalities remain, despite the presence of universal access, basic education, and various — the lack of real poverty.  Okay?

I find this striking.  This is a very robust finding.  It is replicated all around the world with many measures of health outputs, disease.specific, for example, various measures of cardiovascular.  Some diseases are not so sensitive to this, certain cancers, but other things, like diabetes, heart disease, and so on, show up as very significant factors.

So this is a very fundamental thing for people in bioethics to keep in mind.  Health care is very important, but it's only one of the determinants of population health and its distribution in a population.

So what we owe each other is a proper distribution of these other determinants if we think health is that important.  And if, as I do, we think health is important because it protects opportunity for people.  Then other factors about social justice besides simply access to health care are going to become very prominent in thinking about the distribution of health in a population.  So this I take to be a step beyond the way I was thinking about this problem 30 years ago.


PROF.GEORGE:  Could I just ask you to walk us through it a little bit?  I am having trouble distinguishing the colors except for the darkest one there.  Can you just tell us who is who here very quickly?

DR. DANIELS: Sure.  Your tallest bar is your administrative, the highest levels within the system.  This is your administrative level.  This your professional.  I think I misstated.  So this will be your clerical.  So these have twice the mortality rate.

These are the other of the other means, like manual workers within the civil service, janitors.  These will be your white collar clerical workers.  These will be your professionals within those.  These are your high-level political managers and so on of the British Civil Service.

So what you see here is socioeconomic rating.  The poorer you are, the higher your mortality is.  And this is just the finding we find all around the world.

The initial data on this, I might add, was Vershau did studies in the mid Nineteenth Century, 1840s, looking at health by some proxy measure of status.  And what he found was the same sort of finding.

And I know it won't be a happy thought to entertain, but Engels did the same work in the mid Nineteenth Century looking at housing size on streets that were sort of a gradient of wealth measure and then in neighborhoods.  And then he found that health levels varied with the house quality in the neighborhoods he looked at.

What we found in the social epidemiology literature is, for example, that big multiplying effects in the gradient of health take place when you combine residential segregation in the United States with lower levels of education, with lower access to jobs, and so on.

When Michael Marmot gave a talk at Harvard last year, he used your fair city to illustrate this problem.  He said if you get on the Metro in downtown Washington, for every mile you ride out towards Rockville, you increase life expectancy by one year.  And that's a socioeconomic gradient of health.


DR. HURLBUT: From what you just said about Engels, if I understood it right, it wouldn't be every mile out but what your house looks like in the neighborhood you live in.  Isn't that what you just said?

DR. DANIELS: Well, he was taking the house quality by street to a rough indicator of wealth of the people who owned the house.

DR. HURLBUT: The reason I ask you that is because there's a study coming out in the American Journal of Public Health done by researchers at my university, Stanford, that shows the death rates for poor people living in rich neighborhoods are actually higher than for the equivalent.

DR. DANIELS: Yes.  I heard that result.  And that would be quite compatible with some of Marmot's thinking about this because the focus on status and your relative perception of your status might make a difference in that.

DR. HURLBUT: So the implication is —

DR. DANIELS: But that wasn't really what Engels was doing.  He was just looking at a crude measure of size.

DR. HURLBUT: But the implication is that, even beyond immediate community access to education and services, that your sense of self, your relative status plays — and one theory being the immune system and so forth —


DR. HURLBUT: I mean, there must be other —

DR. DANIELS: Well, this is exactly the Marmot thesis because he will look at good, clean workplaces, which are organized in certain ways and have a certain internal social structure with different kinds of demand and control on the different people playing a role within that workplace.  And you will get a gradient of health depending on how much control you have over your work.  And this may have a lot to do with self-perception of something like self-esteem.

DR. HURLBUT: It raises a pretty troubling prospect because since everybody can't be above average, it implies that there is some kind of an effect of self-perception that you can't address.

DR. DANIELS: Well, when my kid went to school, everyone was above average.


DR. DANIELS: No.  I agree with you.  Yes.  I find the Marmot work raises very troubling, concerns because it cuts a little deeper than simply thinking about what I am going to say, which is the distribution of the key associated factors in the determinants of health.  So I will come back to your point in a second, but I am worried about time.

So if we extend this opportunity base to the social determinants, this opportunity view, then what it says is that the things that we count as health needs are what we need to promote, maintain, and restore normal functioning and includes standard public health measures as well as medical care but also a broader range of determinants needed to promote normal functioning.

So there are obvious basic things, like income, wealth, education, security, basic liberties, political participation.  And there is broad literature on the effects of social cohesion and related ideas, like self-esteem, in Marmot's work that may be harder to think of how to distribute compared to the other goods.

Nevertheless, the picture that occurred to me some seven years ago or eight years ago, when I did this work with Kennedy and Kawachi, was that if you took Rawls' principles of justice just to illustrate what a theory might do, the first principle being equal basic liberties, including a strong emphasis on political participation and protect institutional basis for political participation, fair equality of opportunity principle that on my extension would include health and public health, medical and public health issues as well as education, which he clearly talked about, and other early childhood interventions, plus constraints on the amount of allowable inequality so the worst-off would be made as well-off as they could be and so on.

If you had those principles working, then what the associational studies, the correlational studies suggest is that you would flatten the socioeconomic inequalities of health as much as you could conceivably do through that.

Now, maybe there are other more fine-tuned issues that that is not addressing, such as the self-perception of status within certain settings.  So I leave that aside as an additional issue.

And so I think that this suggests to me is that we need more knowledge about the causal pathways.  And we need some guidance about which, but we do get some guidance about which inequalities are unjust, namely the ones that result from an unjust distribution of basic goods, like education, income, wealth, and so on.

There might still on a Rawlsian view be a residual gradient.  So there will be some inequalities that remain.  And then the question is, what do we say about them?  Are they unjust or just?  And I think the theory is not clear on how to answer that.  And we could have some discussion of it.  But I am going to go on.

The last set of points I wanted to make in any formal remarks is an answer to the third question.  So the picture I have in mind here goes something like this.

I have tried to give you a very general principle, fair equality of opportunity, to think about and use in the guidance of access to health care, public health measures, and even broader concerns about social justice in the distribution of the other determinants of health.

The problem is that these principles under-determine very important specific resource allocation questions that we have.  Since justice requires that we set limits; after all, many important goods compete with each other, our resources are not infinite, they're finite, the conclusion I draw is that the general principles we seem to favor are too general and their applications too controversial to answer some of these specific questions.  And I'll illustrate that in a second.

Because that is true, we have to retreat from some of the direct appeal to these principles to supplement the principles or the goal of seeking opportunity through health with a concern about fair process.  Let's set up institutions appropriate at different levels of resource allocation decision-making, in which there is an appropriate kind of deliberation about these unresolved problems.  And reasonable people will disagree morally about what to do about them.  And that's the context in which this kind of resource allocation decision ends up being made.

I have given a label, "Accountability for Reasonableness," which is sort of cut off at the bottom there, to the four conditions I'm going to describe in a moment for the account.

Just let me illustrate what I mean by an unsolved rationing problem.  There's been a lot of philosophical discussion over the last 20 years of the set of unsolved distributed problems.  One of them is an aggregation problem.  How do we aggregate modest benefits to many people and compare it to significant benefits to a few people and establish priorities?

A straightforward cost-effectiveness analysis would say any aggregation is conceivable, but we maximize our health investment at the margin to get a return on it.  And that's all there is to it.

Similarly, a cost-effectiveness approach to this question, how much priority should we give to worst-off individuals, is none.  We have just simply maximized.  We look for the best maximization of health benefit per dollar spent.  And it doesn't matter who gets the health benefit.  The standard way to put this in the cost-effectiveness literature is to say a qaly is a qaly, whoever gets it wherever in their lives they get it.

That maximization strategy doesn't coincide with how a lot of people think about this issue.  So some people want to give some significant degree of priority to people who are worse off.  That's just shown up in a broad range of social science measurements of people's attitudes towards this problem.

They don't want to give complete priority to the worst off.  They're not maximiners because they know that other people have claims on resources.  And you wouldn't simply do very little for the very worst-off people and leave everyone else out.  You don't want to set up a bottomless pit on resources, pouring them into the absolutely worst-off cases with the lowest return.

But as soon as you're not a maximizer or a maximiner, you're in an unprincipled, uncharted territory in the middle.  Your trade-offs you make are somewhere in this middle ground.

And we don't get clear philosophical guidance from philosophical work on this, exactly how to draw these lines.  The social science literature has a lot of variance in any of the answers it tries to give to any of these, probably hiding a lot of moral disagreement and not simply some standard variation among people.

So I see this as one of a family of unsolved problems.  And, yet, I think in response to those problems, what we need is a fair deliberative process in which people can think about and argue about the trade-offs that are involved in these cases and arrive at a conclusion based on their best judgments about what to do.

So this is a retreat from principled work in theory of justice to supplement a principled account with a procedural justice view that at the margin, we have a lot of unanswered questions that we have to solve by appealing to fair process.

So the general conditions that I think have to apply on such a process — and Jim Sabin and I wrote a book called Setting Limits Fairly, which is an elaboration of this account.  We're putting out a new edition of that this year.  There's a very important publicity condition in which the rationales for decisions have to be made very public and clear to people.

You try to involve as broad a range of stakeholders in the decision-making as you can to vet the kinds of reasons that are being articulated and to play a role in selecting the reasons that they count as relevant for making a particular decision.  You want a revisability opportunity for appeals in light of new information and failures to notice that a general decision doesn't necessarily apply to individuals in the same way.  And you need to make sure that these conditions are met.

So this particular account has had enormous influence, not in the United States, I might add, although I have been arguing with people in CMS that more of these conditions ought to be included in the thinking about resource allocations there.  But they played a role in thinking about the design of the British National Institute of Clinical Excellence.

I'm working with the Ministry of Health in Mexico to put into place an attempt to build on these principles, a framework for making decisions about incremental increases in a catastrophic insurance plan they have just introduced for the uninsured population in Mexico, 50 million people.

So these ideas are having an impact in northern Europe and elsewhere.  And I think they really were developed out of the American managed care private for-profit context, which I took to be the hardest case.  But their uptake is elsewhere right now.

Okay.  Last couple of comments.  What falls out of this in thinking about the notion of a right to health or health care?  First of all, I want to make it clear when I talk about a right to health, I am talking about obligations people might have to arrange the socially controllable factors that affect the distribution and levels of health in a population, to do that in a reasonable way, that if one becomes ill, despite the proper arrangement of those socially controllable factors and you die anyway, no rights have been violated.

So this is not an attempt to say we have a right to health in a very direct sense, but we do have a right to the health product that would result from the proper arrangement of the factors that produce health in a population and distribute it fairly.

So the point I made earlier is that just health, justice in health, requires a broader thinking about social justice in the distribution of other goods.  But if one starts to think about health care — and now let's just say for the moment let's talk about medical care — then the entitlements that arise are going to be contingent claims to a reasonable array of health care services.

And the reasonable array is society- specific.  It's going to partly depend on levels of technology development, resource possibilities, personnel availability, and so on within a given society, but reasonable decisions have to be made with a goal of protecting opportunity in health but done through a fair process that resolves some of the unsolved problems.

So the reasonable array is determined by a fair process in that way.  Some specific implications are that it would probably give some significant priority to treatments, including prevention of illness, over mere enhancements.

I think there are some non-treatment conditions that use medical services that in my view personally are defensible on other grounds of justice.  There maybe disagreement among you, but I would include non-therapeutic abortion in that category.  But there might be others as well.

If you have a reasonable array determined for a population and the population is in a universal coverage system, then it may be possible to take advantage of appropriate claiming across the life span for all age groups.  And there are trade-offs that take place by not doing that in our fragmented system.

So under-investment by employer-based systems in preventive measures means that we may, in fact, have worse health outcomes for elderly adults covered in a public insurance system.

But if one internalized the externalities of thinking through all those trade-offs in a universal coverage system that worked over the life span, one might think through in a better way how to allocate resources in that way that produced equity across the life span.

And I think a view like this ends up giving very significant protection for people with disabilities, but I won't say more about that now.

In fact, I think I will stop any further remarks I make and give as much chance as possible for discussion.


DR. PELLEGRINO:  Thank you very much, Dr. Daniels.

Dr. Dresser?  Discussion?

PROF. DRESSER:  Well, first I want to thank you, Norman, for your work.  I think you made the most sustained and systematic inquiry into justice and health and bioethics from the perspective of both moral theory and practical application.  So I really appreciate your work.

I am going to ask some questions designed to help us with our project.  So here we are, this group, trying to think about what kind of a contribution we could make to this debate today knowing that there is this longstanding discussion that hasn't produced a lot of movement.

So one question is your analysis finds that justice requires us to reduce inequalities linked to health status.  And you rely on Rawls' social contract theory of justice to make this argument.

You mentioned a few other moral theorists.  In the paper, you mentioned some disagreements with a few of them.  But I wonder if you could say more about how different theories of justice would approach health inequalities and perhaps not even a theory of justice but different approaches.

Our group is a group of people with I think different views of justice.  And also we're trying to write something that is useful to people in this country who have widely different views of justice.  I think we would like to bring in as much different material as we could on this matter:  pros and cons.  So I wonder, can you make arguments for reducing health inequalities based on different theories and approaches?

The second big question is, what are the values that we express in our current system?  I think we always say that we want to reduce inequality, but we don't act that way very much.  I think we show a higher tolerance for inequality than most other developed nations.

So this is tolerance for wide inequality and we can never have just access to health and health care.  Are the two mutually incompatible?

And the third one I apologize.  This is a special interest of mine, but I do think it's relevant.  Our group has spent a lot of time on research ethics questions.  So the kind of health system we have is related to the kinds of research that are done.

So what are the implications, if any, to your approach to allocation of resources, to biomedical research?  What would be a just approach to allocating resources for research versus demonstrated health care and research?  Within the realm of research, are there implications for what things are targeted, the types of research?


DR. DANIELS: That's a large set of questions to come back to.  Well, the first question you asked is to say more about different theories that might have a bearing on health.

I was invoking the other theories of justice, ideas that Rawls and Sen and Cohen and Arneson and so on, largely to in a sense borrow from them more systematic attempts to discuss the ethical foundations for talking about opportunity and a principle protecting opportunity.

If I were thinking about this from the perspective purely of public policy, I would not necessarily try to ground it in a set of philosophical theories about which no two philosophers can agree anyway.  Instead, I would look to what I take to be very widely held social values and judgments.

There are very, very few people in this country who will not pay some form of homage to the idea that this is a country in which opportunity is valued and equality of opportunity is valued, fair level playing field and so on.

Now, in practice, we do many things that don't sustain that view.  The question is, what do you think the purpose of public policy is?  Is it to capture what people happen to think in a moment or be willing to tolerate in a moment or is it to provide some leadership that can move a society in a direction that it ought to go regarding the protection of opportunity, which it says it's interested in but often doesn't see how that is harmed by various other policies that are put in place?

So I would try to keep my eye focused on the very general value that I think is widely held, even if the details about sort of how to achieve it end up being pursued in confusing ways and maybe even misleading ways through some public measures that are undertaken.

So I guess I think, for example, our recent tax policies are not promoting opportunity in an equitable way across a population.  And this goes back prior to the current administration.  If we go back a couple of decades and start to look all the way back to the '70s at a whole set of policies which have produced widening income inequalities in this country, leaving very large portions of the population behind, these are the factors that will tend to promote health inequalities over time.

The status differences that emerge in people's mind out of this, there's much more context in which to have that happen.  So I'm imagining that there are many policies that are activated in the name of promoting opportunity.  Federist people can spend their own money.  That actually may mislead people about the direction in which opportunity can be best pursued.

So I would not necessarily go to a range of different philosophical theories because I think this is in some ways fairly well- explored territory that theories are not going to give a converging answer on this.

I tried to provide a convergence out of theories that are critical of each other, but they're all sort of on one end of a scale of if you take it as moving away from — they're all concerned about something to do with inequality of outcomes.

Okay.  The second question you asked is what values are reflected in our system and regarding the tolerance for inequality.  I was already speaking a bit about that.  I think in our system, we do tolerate inequalities to a higher degree than many other developed countries in the rest of the world.  Is that a good thing or a bad thing?  And what can we do about it?

Well, I guess in my own view, it seems to me I'm not such an egalitarian that I am interested in some form of strict equality across all kinds of goods and so on.  I want to operate in a framework in which I imagine a broad range of inequalities stimulates risk- taking and provides for growth and so on.  So I don't want to rule those sort of fairly widely held beliefs out of the picture.

The question is, what are the constraints that one puts on that?  And I think, again, this goes back to the question of, what is the role of conclusions about what the public now thinks about something?  Is that determinative policy or is it something that policy can alter over time?

If I don't like a picture that says policy should simply be an attempt to construct what we take public opinion to be a proxy vote for, we have done surveys, we know what people think.  Let's view that as if it's a voting system and try to move in that direction because the public may not have thought about certain things very well or carefully or certain trade-offs it has to make very well.

That's why deliberative bodies that are supposed to be making decisions and that according to our Constitution are supposed to deliberate and not simply vote just as their constituents think.  Those bodies are supposed to think through what they think the public good is.  The public good may be something that can be pursued only by partly leading the public in certain directions.  And obviously there are corrections.  You go in the wrong directions.  The public will correct you.

So my own view is not anti-democratic.  But it is a suggestion that good progress towards social goals can be made only if we have an effective deliberation about them.

PROF. DRESSER:  I guess what I was trying to say, though, is there has to be some compatibility.  I mean, the people in politics will not lead unless they hold certain values.  I mean, you have to have thoughtful leaders committed to something and a representative democracy that's going to be somewhat reflective of their constituents.

I guess this goes back to my first question.  I certainly take the value of the opportunity approach to this problem, but I am hoping that we can also bring in other approaches to try to build more appeal to a wider range of people in politics and the broader community who would say, "Well, okay."  But that doesn't really persuade me."  What other good things would come of this?

DR. DANIELS: Let me mention a couple of things that might come of, say, a universal coverage system that have already been pointed to by various people.

One of the constant complaints we hear is the enormous lack of a competitive edge that our businesses have in recovering the costs of health care as compared to other places, where they're more broadly spread across the whole society.

So if you had a universal coverage system, you might, in fact, create a context in which American industry could better protect certain kinds of jobs.  And that itself contributes back to health.

I also think that if you had a system in which there was a — if you had a system in which there was perception that an important piece of security for people was being provided for everyone by the system.  And your loss of a job didn't necessarily mean you were going to lose health care and various other goods like that.

Then you might build respect for the role of public institutions in securing and protecting people.  We know that public attitudes towards the value of what government does is largely affected by what government does.  And so we see in many countries enormous support for highly strained systems that are funded at much lower levels than ours, sometimes as much as 30 to 40 percent what they are.  And, yet, they produce comparable health outcomes, maybe better, usually better, with higher rankings of public support for the system than we get here.

Well, that's an interesting fact.  So I'm thinking of social cohesion as a possible benefit that comes out of this.  That is not itself a health benefit but might, in fact, have health effects for the reasons I pointed to before.

So I am thinking that there are a lot of goods that would come from the securities that you would provide a population with a system that gave them universal access.

And if you go back to the last attempt at that, right at the early Clinton years, I was on the ethics working group of that task force.  And most of us did not like the design of the plan that we were working for, which had been more or less decided on political grounds before the task force was assembled.

And if you did, I did an informal survey of everybody I encountered and asked them what would be their favorite plan.  Two-thirds of the people I surveyed informally would have preferred a different plan from the one they were working on.

Nevertheless, most people said, "We'll do this because we think it's better than what we have."  And that's the compromise everybody was willing to make.

Well, that plan obviously was a catastrophic failure for a range of reasons, which are worth discussing.  But my own sense is that the fundamental lesson that I did not draw from the failure of that plan is that the American public does not want a universal health care system.  I think the American public got fed up with certain messages they got about how complex this would be.

I think the large employers, who were backing, initially backing, the plan decided they could get their costs down without getting entangled in the enormous apparatus that was being set up.  And there were a lot of people who pulled away for those reasons.

So I think that one shouldn't infer from that that the American public did not want a solution to this longstanding problem.

DR. PELLEGRINO:  Dr. Rowley?

DR. ROWLEY:  Well, I appreciate both your comments to us and also some of your writings.  And I want to follow up on this last point.  Obviously there has been a major change in the Congress due to the election.  And do you think there is a possibility that one could develop a plan that would have more general support and really return to the notion of universal health care?

DR. DANIELS: Well, I'm not a politician.  And I don't know how to read this very complicated Congress that was just elected because it's not clear to me that it was elected for these purposes.

DR. ROWLEY:  No.  I understand it was an anti-Iraq war primarily.

DR. DANIELS: Well, that's part of it.  And maybe there were some other things.  But, nevertheless, you know, I'm just not an expert at thinking through what that means, but I'm an optimist in the following sense, that I think there are a lot of people who are very worried about health care in this country who are very negatively impacted by job insecurity and worries about beingin and out of health care coverage and that this is a unifying problem.

It cuts across a lot of different parts of the country.  And anybody who came up with a good proposal to address this problem that I think would — if it were done in a way that did not run into the enormous opposition that not the last one but the previous efforts did from physicians themselves.  No reform could take place without some significant support from physicians since they have to work in it.

But also, you know, we have invested so heavily since the early '90s in capitalizing certain kinds of health delivery components in a private way.  They would not become a piece of inertia that one has to incorporate in a system.

So exactly what the design would be to accomplish this I'm not sure.  I think it gets harder with each effort and harder the more costly it is.  And it's more costly.

You know, American unit prices are the highest in the world by a long spell.  And the constant mantra we hear is that competition will solve that problem.

But in certain ways we have more forms of market competition than other countries.  What we don't have is a reasonable balance of monopoly and monopsony of powers.

A good example of that is ability for Medicare and Medicaid to negotiate drug prices.  In no other country would the law have been designed the way we did it because in the name of competition, we basically have emasculated the purchasers.

DR. PELLEGRINO:  Dr. Gómez-Lobo?

DR. GÓMEZ-LOBO  Thank you for your exposition.  I thought it was very insightful.  And I think that it's very important to go through the problems of health to be underlying conditions to be produced as to how an equal distribution of wealth and income produced these health inequalities.

On the other hand, it seems to me that you're engaged in enough of a fight here.  And if I just think about this philosophical side of it — I wanted to ask you this.  Perhaps you did discuss this with your former colleague Robert Nozick because you have on the opposing side precisely what you have mentioned, this notion that distribution of wealth and income is almost socialism, that freedom to choose would be lost, et cetera.

Now, what I am interested in is philosophically how you face those objections, which I think are deeply embedded in the American public these days, in spite of the fact that I think it's true what you say, that there are more and more people worried about, say, job security than the, well, 42.45 million uninsured.  Could you elaborate on that, please?

DR. DANIELS: Yes.  Well, this is an invitation to go into highly contentious philosophical territory.  Look, there was a lot of discussion of the self-ownership ideas that Nozick put forward.  And there has been an awful lot of philosophical work in the field since then that raises other ways of looking at this issue than the way that the debate was cast in the mid '70s in the conflict between, say, Rawls and Nozick.

Sen's discussion, for example, has caught very wide ear globally, not so much in the United States except among my students, who all in the School of Public Health are very, very enamored of this idea that what one is concerned about when you try to generate health in the public is the development of capabilities, people to do or be various sorts of things.

So a lot here, this goes to the question of choice.  This is the reason I raised this.  What are the constituents of the kinds of choices we want to see people be able to make?

So one of the constituents of the kinds of choices we want people to be able to make is that they have the capabilities to pursue various goals that they would otherwise be able to pursue.  Were, for example, they healthy or not disabled?

And so the fundamental issue here is, should we think of choice as something that is constrained in this way by social structures that restrict our ability to remove certain kinds of obstacles from people or do we see choice as something that is more expensive and needs to be facilitated by the kinds of things we could do; for example, by keeping a population healthy or well-educated?

So concerns to distribute this in a way that lets people do what they otherwise have the ability to do in education, for example, would be a kind of redistributive component that fees into the importance of choice.

So the issue wasn't choice versus no choice.  The issue was, what are the conditions under which choice has meaning for a lot of people?  So my cut on this problem is a little different from the one that you point to in Nozick in that I think that social conditions create the conditions under which choices are meaningful for people.  And we can expand their autonomy in appropriate ways.

DR. PELLEGRINO:  Dr. Carson?

DR.CARSON:  Yes.  Thank you very much for that presentation and for the lifetime of work you have done in this area.  As a young person growing up on the wrong side of the tracks, I benefitted greatly from the medical assistance system.  And obviously it encouraged me to go into medicine.

You know, the standard quote is 45 million people in this country who don't have health care insurance.  Of course, we know that they do because they go to the emergency room.

That's something that I call inefficient beneficence in our society because, you know, it costs us an awful lot of money to take care of those people in our emergency room system.

And I wonder if perhaps more effort should be placed into creating perhaps a national system of clinics, where people get taken care of just as effectively but at a much lower cost and where there are people who are actually concerned when they come in there with their diabetic complication about the diabetes itself and getting that under control.  That's number one.

And, number two, you know, back to the wellness and prevention issue, you know, there are a couple of groups in our society, well. known to us in the medical profession, the Mormons and the Seventh Day Adventists, who tend to live six to eight years longer than the rest of the population.  These are clearly lifestyle issues.  And the things that they do are not expensive things.

I wonder if there could maybe be more emphasis placed on some of those lifestyle issues, not only for the disadvantaged but for everybody.

DR. DANIELS: Those are both good points.  I am all in favor of a more efficient system than our emergency room system.  And there are different things that one could do, even within a universal health care system you might well want, neighborhood clinics of various sorts to improve access for people in certain neighborhoods, obviously to provide, as it were, ambulatory care centers that would pick up and provide some continuity of care for people who otherwise don't have it.

So I am all in favor of that.  The question is, how does one fund it?  And is it part of a universal coverage system?  Why shouldn't it be part of a universal coverage system?

So I see it as a tactic to be used and explored, but I wouldn't want to make it a substitute for a broader solution to the access problem for the population.

You put your finger on it.  You called it a beneficent inefficiency.  The Institute of Medicine calls it too little too late.  And they're making a point that if you unpack the inefficiency you're talking about, it's not simply that there are increased costs if people go to emergency rooms.

If one actually looks at measures of mortality and morbidity rates for people who are out of insurance for significant periods of time, they're higher.  So the care they're getting is not the same as or early enough to prevent the kinds of serious conditions that people, other better insured people, get.  And this does add to inequality that's already created by the fact that the inequalities in background conditions make more of these people sick more than others.

DR.CARSON:  And it also adds significantly to the cost because it costs five times more to take care of them.  So we're already spending the bucks.

DR. DANIELS: Absolutely.  You know, I was on one of the Institute of Medicine subcommittees that worked on that six-volume report on insurance.  The last one came out a couple of years ago.  And one of the — we tried to put a dollar value on, as it were, what was the unreimbursed care that was given and what additional money would you need to meet the unmet needs and so on.  And it's peanuts in the American health care system.

There were at the time — this was about three or four years ago.  People were talking about $35 billion of unreimbursed care being given.  And with another $35 billion, you would have met the unmet need.  So the opportunity cost of many things we're doing is partly right there.

I never did answer the question on research.  Did you want me to?

DR. PELLEGRINO:  Yes.  Sure.  Dr. Rowley, you're next after this.

DR. ROWLEY:  Well, I am trying to think of solutions.  And I agree with everything that you said.  And I, too, as a physician support —

DR. DANIELS: Well, you get an A.

DR. ROWLEY:  — support universal health care and think that it isn't going to cost that much more if we did it given the other costs that we're already bearing that aren't very effective.

But I was struck, both in your paper and in your comments, about the matriarchal society in Kerala and how, at least measured by health, it has been reasonably effective.

And should we do much more in this country about emphasizing education for women?  Now, I understand that in one sense we have universal education.  I also understand that women are increasing in a proportion in higher education as students.

But, even so, there are a whole lot of poor both black and Hispanic women, who I think if they were especially encouraged that they have a unique role to play might be more effective in helping to combat some of the problems we have.

I am interested in your assessment of this and any information you might have.

DR. DANIELS: Yes.  Well, I mean, as you said, over 50 percent of college enrollments are female now and, especially as this is happening in many professional schools as well, more female medical students than male and so on.

So there has been some sort of revolutionary change in the distribution of that.  As far as —

DR. ROWLEY:  But they're not the care-givers of the poor children that are at greatest risk.

DR. DANIELS: Yes.  And, which is never going to happen, if I were given the chance to design a policy that would address these issues, I would place a lot of emphasis on training programs and job-training programs and education programs for young adults and push it back so that there were clear signals that these tracks were open to people.

And I would put a lot of investment in early childhood intervention programs, like the HeadStart and other things, that actually have very good social science positive results behind them because my own sense is that these would be very good ways to engage women and men.

I think the problem can't be addressed just through women.  It's very clear that if one looks at the major causes of death among African American men, a lot of it is the result of hopelessness about other prospects in the society.  And so one sees high drug abuse, imprisonment, and so on.

And my own sense is that you need a bigger cultural change than simply addressing the problems of women in that setting in order to undercut the grounds for generating health inequalities.


DR. KASS: Thank you.

Well, I am going to spoil the good cheer.

DR. DANIELS: I was waiting for that.

DR. KASS: And I don't want to do it sort of contentiously because I want to say at the outset that I do care a lot about the health needs of those people whose health needs are not being met.

And I would prefer, in fact, the formulation.  I'm trying to put it as neutrally as possible, leaving out all the fancy philosophical words.

What should our society do to meet the needs of the people whose needs are not being met?  I'm trying to do it without the language of justice or without the language of obligation or without even the language of good.  That seems to me as to open the discussion without necessarily buying into a particular theoretical framework.  So that would be a place where I would hope that there would be a common agreement.

And you sort of tossed off at the beginning you didn't know what a good society was, but, among other things, it would have to be just.

And then there is a particular understanding of justice in terms of equality where I don't follow you.  In other words, I'm interested in justice, but the Rawlsian and corrective understandings of justice don't strike me as sound or correct.

So one question I would have for you — and this is a question, as opposed to a comment — by the way, this goes to Rebecca's comment, too.  It may very well be that the reason that some of these arguments of 25 years ago haven't been successful is that they are not philosophically, never mind politically, philosophically framed in the way that could, in fact, attract adherence.

So a question would be why is health care that kind of public good that comes under the heading of distributive justice in the first place?  I mean, before you move it into the justice category, I need to be shown that this is the kind of thing that's rightly taken up under the heading of justice.

And, therefore, I'm led to be upset by inequality in health care; whereas, one could be interested not so much in the inequality of health care but in the failure of needs to be met.

So, in fact, I really wonder sometimes listening to you whether the real interest isn't somehow in fundamental social equality.  And health is a good stick with which to beat for that cause, rather than our interest being sort of improving the health of people, whether there are inequalities or not.  So that would be one question.

Let me leave it at this, the second question.  You say toward the end that there has been a retreat from the principles to concern with fair procedures.  And sometimes it seemed that the fair procedures were set to be a supplement to the principles.  And sometimes they were set to be by concession to necessity a replacement for those principles.

But then it turns out that there are abstract principles here, too for what are fair procedures.  It sounds like we're talking about — we will set by experts for how certain kinds of bodies, often elite, are in a way going to sit and think this through.

I guess my sense is we have something called fair procedure for worrying about these questions.  It's called politics.  And where arguments are made — and this is not to say that the people are simply wise.  But it may very well be that the people are wiser than councils of bioethics — staffed this way or staffed by a different administration.

So I guess I wonder, what kind of political model do you have when you're talking about the institution of these fair procedures that's other than the politic that we have but, more importantly, why do I have to go down the road of justice in the way in which you have taken me in order to accomplish the result for better health for the American people whose health is being under-served.  I think I can do that without raising the question of equality at all.

DR. DANIELS: Okay.  Well, first of all, the account I give is a needs-based account.  I am focused on a lot of discussions give and a lot of my writings on departures from normal functioning is an attempt to draw a clear line around the kind of needs that we are focused on in this case.

It is not simply a concern about equality but, rather, a combined concern about levels of population health that is fairly distributed, which might allow for some inequalities.  But it is focused on trying to move as many people towards normal functioning as one can.  So that's the overall goal of the picture.

And, indeed, one could look at this as it's one of the few cases, unlike, say, income over wealth, where you might say that maximizers and egalitarians come together.  The ultimate goal of a health maximizer is to produce a population in which everybody is fully healthy.

The ultimate goal of an egalitarian would be to produce a population in which everybody is fully healthy because that would be the best outcome from an egalitarian perspective.  There are no inequalities in health.  Everybody is healthy.

Short of that ultimate goal, there are going to be disagreements between maximizers of population health and those concerned about the equity and the distribution of the health and which particular policies you follow to move us towards that goal.

So I guess what I would say is a lot of what I was trying to do was to show why meeting certain needs is a concern of justice.  And in this case, it was particularly the kinds of needs that are being met are ones that have a bearing on the distribution of a fundamental good from the perspective of justice, opportunity.

So the overall structure of the theory was intended to answer exactly the question which you're saying I wasn't answering, but that was what motivated it.  Do you want to go back?

DR. PELLEGRINO:  Professor Kass?

PROF. KASS:  Well, could you then say — I mean, the fair quality of opportunity, at least it's not the only thing you're talking about.  But it's one of the central ideas here.

I'm not sure that that is — how would you argue in terms of the American quality and the American principles, that that is a public good that then needs to be distributed equally.  I mean,in the Preamble to the Constitution, they talk about establishing justice.  I don't think they have that in mind.

DR. DANIELS: We do have the Fourteenth Amendment.

PROF. KASS:  Yes, we have a Fourteenth Amendment, but it has both to do with the absence of discrimination.  And that is certainly its context.  This will be a long discussion, I grant, but — well —

DR. DANIELS: Can I go on to your other question?


DR. DANIELS: Your other question was, isn't politics at the core of all of this.  And what do we need fair procedures for?  I went very carefully through the discussion of fair process, but one actually looked at the book, which it's developed or the Office of Public Affairs article, where the core ideas were first laid out.

I think of this fair deliberative process is an attempt to put into a range of institutional contexts.  Something that I think has democratic deliberation, as best one can it in those institutional settings with strong publicity conditions that feed out into the broader political arena, in which democracy definitely plays a role.

Though I'm not imagining this as an alterative to politics, I am imagining that this is a way of enhancing our political culture by making more people aware of the kinds of reasoning that goes on in resource allocation decisions.

And by holding the people making those decision more accountable to being able to defend and explain their reasoning around them.  Two are broad public, which may or may not be able to intervene directly in those  institutions.  For example, if you have a private, for-profit management care, you're not going to be able to involve and require them to bring in stakeholders from among all the consumers.

But what you might do is compel them to be transparent about resource allocation decisions, the reasoning behind them, so that the public could operate through broader political mechanisms to impose regulations or restrictions or something else on the institutions that are making those decisions.

And meanwhile a clear, concrete record would accumulate over time of those institutions were thinking about questions.  And I think of that as a kind of case law that emerges over a period of time and is a good way to hold the people who are politically responsible for regulating and appoint in public agencies the people who make these decisions.  It's a good way to hold them accountable for what those decisions really do.

I was never thinking of this as an alternative, elite alternative, to democratic process but, rather, as a way of enhancing democratic process and bringing back into the political arena a clear reason about the kinds of trade-offs that are often hidden behind budget decisions that nobody knows about.  We only see their consequences.

DR. PELLEGRINO:  Dr. George?

PROF.GEORGE:  My impression, Dr. Daniels, is that for Rawlsians or other egalitarians, when they encounter a situation of social inequality or inequality with respect to something that a Rawlsian might consider to be a primary good, like opportunity or wealth, what strikes them as the right question to ask is, how is that inequality justified?

And then there are various theoretical proposals and standards, like the maximin standard for determining whether a particular inequality is justified.  But for non. egalitarians, including those who do agree, as Dr. Kass said he did, with the idea that meeting needs is a concern of justice, they don't see the question.

The question "How is that inequality justified?" is not the first thing that jumps to mind.  If the inequality raises a question at all, it raises a question along the lines I think of something like, well, there is an inequality with respect to an outcome.  What harm is that inequality doing or is there something here to worry about, not so much in terms of the inequality itself.  Is there something to worry about because people are suffering, people are being harmed, there is some damage to the interests of people whose interests count in the relevant deliberation?

Now, if I am right about that — and perhaps I am not — if I'm right about those two perspectives, how would you propose to adjudicate between them?  What would be the considerations that would lead one to adopt an egalitarian point of view and, therefore, to look at the question of inequality in a certain way or to adopt the non-egalitarian point of view?

DR. DANIELS: Well, I just want to say that within the philosophical orthodoxy, I don't count myself as a strict egalitarian.

PROF.GEORGE:  I realize you're not a strict one, and I know what a strict one would be.  And there are very few strict ones as far as I can tell.  But there are also —

DR. DANIELS: My friend Larry Tempton is.

PROF.GEORGE:  Okay.  There are also very few strict libertarians, but there are still people who definitely fall into the libertarian, as opposed to the egalitarian camp.

DR. DANIELS: Well, I suppose one way I would start to discuss this issue is to point to some of the context in which you're not troubled by inequality, but there are some — and you are willing to ask what harms are emerging or what needs are not being met or some other questions like that.

And I would try to bring the disputants together around a better awareness of the degree to which some of the concerns that look like egalitarian concerns are really concerns about reducing certain kinds of harms.  And there may well be some kinds of recognitional issues that tend to be ignored from within the anti-egalitarian perspective.

So if one goes to Marmot's work, supposedly we actually find mechanisms.  I'm not saying that I fully believe everything he's saying.  Okay?  But suppose we find mechanisms in which people's perceptions of their status tends to create the conditions under which they're caused to be less healthy than other people.

Would we start to worry about those social conditions?  And we might ask questions like, well, what would it cost to remove them?  Is this the problem of those individuals?  They're resentful and envious and we ought to try to get them out?

But if it turns out that as most people respond that way to those conditions, then we may be dealing with a very basic mechanism of some sort.

And then the question is whether things that looked otherwise to be a reasonable distribution of goods turn out to be harmful in ways that haven't been acknowledged, whether that would break down the disagreement.

And it could be that some of those are connected to kinds of inequalities that people perceive.  Even the egalitarians were not arguing for them initially on the grounds of the harms that they were doing.

So, I mean, then you ask me how would I try to break down a disagreement.  That's the answer to that.  I don't know how far I could go with that answer.

PROF.GEORGE:  Well, it's an interesting answer because, as I understand the answer, it's a way of clarifying the dispute between the disputants —


PROF.GEORGE:  — and seeing where the common ground is and perhaps where there isn't any.

DR. DANIELS: That's how I like to —

PROF.GEORGE:  But I guess what I was really inviting you to do was to tell me what the criteria are by which I should decide for the general egalitarian view of things over the alternative.

Maybe if I put it a different way, it will be an easier question to answer more directly.  Do you think that inequality of outcome with respect to the kinds of goods we're talking about in this discussion is something prima facie bad in itself?


PROF.GEORGE:  Okay.  Then if that's the case, I think this —

DR. DANIELS: So in other —

PROF.GEORGE:  — brings us back to Dr. Kass' question.  In your analysis, what if you just dropped out the references to inequality altogether?  Would the thing go through just the way it is?


PROF.GEORGE:  I mean, is Leon's suggestion about "Look, the equality is not doing any work in this argument at all" correct?

DR. DANIELS: That's not true that it's not doing any work at all.  It's doing a lot of work.  The mere fact, let's go back to the example that someone mentioned and I alluded to it.

Suppose you had a subculture or a religious group that engaged in a range of practices.  They didn't smoke.  They didn't drink.  They had purely safe sex and so on.  And, lo and behold, their aggregate health outcomes were better than those of the rest of us sinners from their perceptive.  Okay?  So we have a health inequality that exists.

And suppose we had done everything we could to educate the public about smoking and drinking and all the rest of that but we want to leave room for people to pursue their trade.offs in life as best they can.  And so now we have a health inequality that emerges from these practices.

Do I think it's unjust?  No.

DR. KASS: Just a tiny follow-up.  You do, however, think it's unjust not to tend to the newly acquired health needs of the people whose lifestyle is absolutely opposite of those and who are unequally sick as a result.  Why?

DR. DANIELS: Yes.  Well, here it's an issue of causal attribution that is partly, partly, underlying my concerns.  When I gave the idea of the people enmeshed in a religious culture, notice part of what happens there is that in many ways, their children benefit from the authority relationships that exist within that culture and so on.

If we look at other contexts in which we see significant differences in lifestyle behaviors, although they don't explain the socioeconomic gradient I was referring to before, maybe a third of it but not all of it, one does see important correlations between socioeconomic status, smoking rates, things like that, which flipped early in the last century.  It used to be smoking was a disease of the rich or cause of disease of the rich.  It became a cause of disease of the poor for various reasons.

But if one looks at then the mechanisms, lots of peer pressure among children, lots of other cultural factors, — you could think of not just smoking but diet.  I mean, people grow up in different ethnic communities with very different lifestyles and cooking styles.

So my mother's cooking is partly responsible for my current battles with my weight and so on.  So I wasn't just trying to blame my mother.  On the other hand, disentangling ascription of responsibility is very difficult.  We have some literature that shows that working class people actually try to stop smoking at the same rate that others do, but they fail to succeed as well as others for various reasons, Barbeau's and Krieger's study and so on.

So these are very complicated stories, about which we do not really understand all of the mechanisms.  If we then want to say we're ascribing responsibility to people for their bad health outcomes and, therefore, we don't have a social responsibility to address the unmet health needs or the increased health needs they have, I think we are hiding behind and unexamined notion of responsibility.

DR. PELLEGRINO:  Dr. McHugh?  This is the last question.

DR. McHUGH:  Well, I, too, thank you for your presentation, but I have to tell you that I am made very uneasy by it because of the shift that occurs within it in relationship to what seems like epidemiological research and then into a domain that very much smacks of political opinion and political pressure.

But I am lost in that.  The philosophical background to that are outside of my experience.  And I depend upon the Council and other people within it to tell me whether this unease that I feel here is unreasonable and that I should put it aside.

But that is not the direction my question wants to go in.  You begin with the descriptive epidemiology playing out, socioeconomic status, and its relationship to mortality and morbidity.  You then went to analytical epidemiology and described the fact that the variation in wealth is not the complete explanation or can't be the complete explanation, nor is the variation amongst countries in their Gross National Product sufficiently explanatory of these problems.

But then you step from there, rather than into experimental epidemiology, which one would expect, and discussed how various controlled studies might show us a particular direction to go, you then stepped off into this philosophical arena.

I suppose I am calling for a continuation in the direction that you went, that you started in, and ask you for your consideration of studies that have a more experimental basis.

For example, the HeadStart study is a study that I have been very interested in and was greatly committed to.  And you say that it is a success.  In point of fact, I believe that it has turned out not to be a success in the long — it certainly hasn't met its promises that I had hoped for.

I don't know why we aren't asking you and people, others of your persuasion that bring in issues of tax policies, abortion, safe sex, and the like, all of which are dubious, to talk more in the science area and stick to it.

DR. DANIELS: Was that a question?

DR. McHUGH:  Yes.  I want to know what science you're going to turn to to get into the experimental area where controls and real data will emerge.

DR. DANIELS: Well, I'm all in favor of real social science and social epidemiology that would look at these things.  We don't have good controlled experiments on many of these questions.  And I would be all in favor of more support for them where we could find them.  So as far as —

DR. McHUGH:  Maybe you should just suggest them.

DR. DANIELS: Well, I think there are further ways to pursue the implications of what we do know than simply saying that we're just short of the science on this.  I think we're short on the science that would tell us exactly what policy levers to pull.  And I would like to see much more of that developed.

And one of the areas of work I have done myself over the last eight years has been to try to develop tools for monitoring and evaluation of health sector reforms in developing countries to try to look at how to make what I view as social experiments without any monitoring/evaluation into evidence-based policy matters.

So I have done a lot of that.  I didn't think that's what you were focused on in this meeting.  And that's really not what I was asked to do for the presentation.  But I'm happy to give you citations to a couple of articles that begin that sort of work.

If you look in the American Journal of Public Health, I don't know if it's January 2006 or late 2005.  There's an article in a special issue which had a lot of articles on transforming health systems.  It was an article by me on social experimentation and ethical and scientific evaluation of those kinds of experiments.

So I am not in disagreement with you about the need for good social science.  I am not a social scientist, however, by training.  So this is dappling.

DR. PELLEGRINO:  Thank you very much, Dr. Daniels.  Thank everyone.


DR. DANIELS: Thank you.

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