THURSDAY, July 24, 2003
Session 1: The “Research Imperative”: Is Research
a Moral Obligation?
Daniel Callahan, Ph.D.,
Director, International Programs,
The Hastings Center
DR. CALLAHAN: Leon and I have worked together for a long
time and I can remember my first discussion with you, I think, at
my house on Summit Drive, and we talked and you seemed exactly the
sort of person I was looking for. You were suggested to me by Paul
Ramsey who many of you knew.
It's a double pleasure being here then to be with Leon and
this particular Council and also because I think I know at least
two thirds of the people on the Council and it's so nice to
see you collected here.
The term research imperative first arose for me with an article
that was in The Hastings Center Report and Paul Ramsey used the
phrase. He engaged in really a most interesting debate with the
Jesuit theologian Richard McCormick on the question of human subject
research on children, particularly what's called nontherapeutic
research, for the sake of knowledge, rather than direct therapeutic
treatment of children.
And McCormick argued that children should be available for nontherapeutic
research. Their parents should be willing to make them available
as a sort of a noble sacrifice for the good of humanity and the
advancement of research. Paul Ramsey rejected that notion altogether,
felt children should not be used in that way and accused McCormick
of falling prey to the research imperative.
I had no particular interest in research at that time and it had
passed out of my head, but shortly thereafter I did run across Joshua
Lederberg, Nobel Laureate, former President of the Rockefeller University
who said to me at a meeting, I gather something similar to what
Leon quoted at another meeting saying "If we don't carry
out research, the blood of those who die will be on our hands."
I wondered at the time whether that was true, but again had no
particular interest in research and didn't pay much attention
to it, so it faded away. But in recent years, all of that sort
of came back to me for a variety of reasons. I got interested in
the whole enterprise of biomedical research in this country, particularly
in this country, although obviously it goes on in other countries
And there were a number of things that caught my eye. First of
all, the NIH budget is something of a federal marvel. So far as
I know it is the only budget that hasevery year without fail gone
up rather than down. A researcher went through all the transcripts
of hearings of the National Institutes of Health and it has always
had complete bipartisan support. There's never been any serious
dissent of any kind.
There has been some discussion in recent years about the priorities
of NIH, but basically no objection to an increased budget and typically
the President each year, whether Democrat or Republican, has put
in for a certain amount for the budget. Congress has always found
that inadequate and forced the NIH to take more money and they were
happy enough, of course, to take it. So the NIH budget caught my
eye as an interesting phenomenon in American life.
I got interested also in the escalation of what I think is escalating
history of medical research in this country where research was a
worthy cause in the late 19th century when it first was taken seriously
in this country, particularly in medical schools. But the kind
of shift from a worthy cause to a kind of imperative, necessary
cause which really came into play after the Second World War and
I suppose nicely symbolized by President Nixon's declaration
in 1970 of a "War Against Cancer." And thereafter, language
of the imperative of research became stronger and stronger.
More recently the stem cell debate caught my eye since many people
have argued and you may hear it in your discussion, but a moral
duty to pursue such research. Simultaneously, more or less, the
pharmaceutical industry, for those of you who follow it you can't
help following it a bit these days, pharmaceutical industry has
long claimed that they, the main reason they need the high profits
is in order to carry out research which is going to save future
lives and relieve future suffering. Hence, they have used a very
strong research imperative argument in justifying their drug pricing
and the like.
Now to me, the interesting question is, why has this happened?
What has been the reason for this kind of increased interest? It's
rather striking, if perhaps unusual, that health care, I suppose—particularly NIH research, but it is a budget that has gone up
despite the fact that health is getting better. It seems to me
there's some straight line correlation between the better health
we have, the more money we spend on health care and particularly
the more we think we ought to spend on research and the argument
there is, of course, the prospects of new breakthroughs are greater
than they've ever been historically and therefore we should
go after them.
In any case, as health gets better, the budget goes up and spending
on health care continues to go up as well.
Now I think that there are a number of things culturally that
have happened. First of all, I think there's a very strong
feeling in this country that illness and disease, which have always
been considered human evils have taken a kind of transcendent status
as evils in our country. They are seen as among the worse things
that can happen to people, one of the most important things we can
spend money on, and that there is really nothing better we can do
for each other than to invest money in research to promote better
I think also, as part of that, is that one shift that I think
has taken place since the Second World War has been a kind of abolition
of fatalism. It's been argued that in the past we reconciled
ourselves to aging and death simply because we could nothing. People
could do nothing about it and then it had to be rationalized, it
had to be given a place in human life, but fatalism, many would,
in effect, argue should be put behind us. Now we can do something
about the evils of illness and disease.
The political scientist, Michael Walzer, I think very perceptively
made this point about 20 years ago when he said, "What has
happened in the modern world is simply that disease itself, even
when it is endemic rather than epidemic, has come to be seen as
a plague. And since the plague can be dealt with, it must be dealt
with. People will not endure what they no longer believe they have
to endure." That was from his book, Spheres of Justice.
I think it's also the case that the pursuit of health through
research is seen as not only a good in itself, morally and socially,
but also of great economic benefit, both in the lives saved and
the future productivity of those lives, but also in the jobs and
profit that research generates. A strong argument behind the annual
NIH budget is that the research is exportable. It's one of
America's great products. People need it. They love it. And
they will spend money for it.
Most importantly, I think, and an issue that's worth a side
discussion, but we won't have time to get into today, a strong
argument that medical research offers the greatest promise of eventually
reducing our escalating health care costs. A number of economists,
David Cutler and the new Commissioner of the Food and Drug Administration,
Mark McClellan, have argued very strongly that research and biomedical
investment is the greatest investment that has been made on anything
in this country, that has been worth trillions of dollars to our
economy. And both the pharmaceutical industry and from time to
time the NIH itself has argued that better research is what will
beat the problem of rising health care costs. I would add as a
footnote, it hasn't happened yet. It seems to me a wonderful
idea, but the historical record is not encouraging. Anyway, the
argument has been made.
Now I want to really make three basic contentions in this talk.
I'm going to make them and let's see if I can defend them
and make them quasi-persuasive.
First of all, I want to argue that, in general, there is no moral
research, no moral imperative or duty to pursue medical research,
or in particular, to pursue any specific line of research. Research,
I want to argue, is a moral good to be weighed against other human
goods, but not an overriding moral obligation. That's the first
The second is that in the absence of what I will call a common
metric, there is no rationally justifiable or viable way of balancing
the moral good of research against other claimed moral goods.
And my third contention is that in the legal and ethical policy,
international policy now in human subject research that has developed
since the Nuremburg Trials in 1947, the principle of informed consent
for competent patients has come decisively to overcome any and all
claims of research benefits that could come from violating the principle
of informed consent. I think this has great historical significance.
Let me go to my first contention, why is there, with one exception
I will shortly mention, no moral obligation or duty to carry out
biomedical research, but at the same time one can say that research
is clearly a moral good? I offer you three considerations for that.
First of all, this is a point that philosophers sometimes make
about the very notion of obligation. Philosophers distinguish between
perfect and imperfect obligations. A perfect obligation is one
which is based on a specific promise we have made. We're then
obliged to keep it. Or an obligation that flows from certain types
of roles we take on such as doctor, policeman, lawyer, what have
you, obligations that typically are called role obligations and
they go with the carrying out of particular professions.
So an imperfect obligation by contrast is one where no one in
particular has any obligation to carry it out. We talk about it
as an obligation, but one cannot say that any given individual has
a duty to carry out the obligation. In that sense, it's a very
weak kind of obligation. Indeed, it's not clear when you talk
about imperfect obligation whether you ought to use it at all, talk
about obligation at all, but nonetheless that has typically been
And here I would want to argue that medical research falls in
the category of an imperfect obligation, imperfect in the sense
that it's not clear whose duty it is in particular to carry
out such research. One can't even claim that of the researcher.
If a researcher decides to do basic research with no interest in
therapy, one would hardly accuse that researcher of being irresponsible
or to say that any given researcher had a particular obligation
to pursue this or that line of research.
So in that sense, medical research itself would be a classic case
of an imperfect obligation. Now it might well be the case that
someone in say the field of genetics who took on particular issues
pertinent to society or therapy would have some moral obligation
to carry through on that if the person had chosen to do that research
it would then begin to take on some of the characteristics of a
perfect obligation. But there's no obligation in the first
place that a person become a particular kind of researcher.
Now this may seem like a rather technical, indeed, precious point,
the kind of thing philosophers have lots of fun with, but don't
persuade many others. I think the question is pertinent because
if we're going to talk about a duty to carry out research, and
obligation of research, we really then have to ask, in what sense
are we supposed to carry out research and what moral sense is there
a claim upon us?
I simply want to argue that it is perfectly possible to talk about
it as a good. It's an ideal of our culture, a very strong ideal.
It is based on the notion of a duty of empathy, mercy, of the relief
of suffering, the virtue of beneficence, the virtues of mercy.
And in that sense, one can make a very strong case that it is a
good thing to do, but not necessarily a strict obligation.
Now by calling it a good thing to do, it seems to me one then
has to raise the question well, how does it compare with other good
things we might do? As an economist might say, what are some of
the optional ways we might spend a similar amount of money? How
do you compare the value and need for man's educational needs,
national defense, jobs, all sorts of other things that societies
need in order to function well?
It seems to me then once one has said it is a good, and simply
a good and not necessarily the highest good, then one is in a situation
of trying to juggle budgets, juggle moral priorities and make a
determination of where we want to locate health over against other
things we might do with our money and with our aspirations.
I think it is fairly obvious in this country, as at least symbolized
by the NIH, that we have given it an uncommonly high status and
this is clearly not the case in other countries. The British, the
French, the Germans all spend money on medical research, but they
don't put nearly the amount of money into it as we do in this
But I would point out that we don't consider it morally objectionable
that they spend less money on research and more money say on other
things, since it seems to me once one begins talking about comparative
goods for society, this will be determined by the politics, the
values, the history, culture and a lot of other things.
So basically, I have a very modest kind of goal here, which is
simply to use an old fashioned term from theology, demythologize
the notion of a research imperative by simply saying sure, it's
an absolutely good thing to do, but once we've said it's
a good thing to do, then it has to be compared with and compete
with other goods in society, whereas to talk about it as a duty
seems to act for many as a kind of a trump care which then allows
people to not only ask for more money than they might for other
things, but also to argue that somehow we have an inescapable duty
and I want to argue with that.
Now I would make one exception which I think is important in our
world. I think one can make a very strong case that there is something
pretty close to a duty when you're talking about infectious
diseases and particularly disease such as AIDS; diseases that don't
simply kill people, but mainly kill younger people and in particular
kill those who are responsible for the running of the society.
And one of the great problems in sub-Saharan Africa is not simply
a high death rate although that, of course, is horrible, but the
point is that what we're seeing is the destruction of the health
care workers, the police force, government administrators, all the
people that make society run, and of course, leaving thousands of
children as orphans. So it's very destructive on the family.
So it seems to me that plagues and particularly those that affect
younger generations and affect the infrastructure of society and
not simply the death rate stand out as a particular exception, which
is only to say in a way that there is a difference between what
was called the endemic diseases, cancer, heart disease and the like
and contagious diseases that seem to fall into a different category.
Now let me respond to the Lederberg argument. I think when we
think about the Lederberg argument, the idea that somehow it's
a sin of omission not to support research and therefore we will
bear responsibility for the results of failing to support the research,
this will certainly be true if we consider a very hard and specific
obligation a duty, therefore, we will have seen, failed in our duty
and thus to be condemned. But it seems to me one has to really
ask about all the other needs of society and ask is it really wrong
to decide in a given society, at a given time that education, say,
is more important than health care.
In this country, we have more or less spent around 6 percent of
our gross domestic product on health care for nearly 30 years or
so. We now spend about 14 percent on health care and around 3 and
4 percent on defense. Thirty-five years ago we spent about 6 percent
on each. So one can really raise the question whether it makes
a great deal of sense or there leads to a balanced society to allow
one sphere, namely health care to so remarkably outpace all of the
others, as if somehow our education system is terrific, we needn't
put more money in that, but only health care deserves the constant
escalating budget that it typically gets.
Now I think in trying to ask the question of research as a good
and comparing it with other goods, we really are forced to ask what
kind of an evil disease, suffering, and death are. Clearly, they
are very important evils. All societies have considered them evils.
As I suggested maybe earlier fatalistic societies had to develop
rationalizations and ways of making sense of them. Many of these,
I believe, still make sense, but we have at least entered a period
where there is not much pleasure taken in arguments that seem to
have a fatalistic flavor to them.
So that pushes us really back to the question of let's take,
for instance, the question of death. I think it's very pertinent
to ask what kinds of death are comparably more or less evil. There's
death by disease. There's death by social violence, war, domestic
violence and the like. There's death by accidents. There is
death by poverty. Can we rank in some sense, even if very crudely
and roughly, can we rank those deaths in terms of evils? I myself
would say that the greatest, the worst kinds of deaths are those
that come from social violence and deaths that are unexpected, unnecessary
and are a function of human evil, rather than biological evil.
We can obviously argue about that matter, but it seems to me it's
important when we begin thinking about the comparative good that
medical research can bring, what are the comparative evils we are
trying to overcome and how do we want to understand and rank those
To my mind, premature death is something to be worked against.
Threats to public health are to be worked against. This would particularly
include infectious diseases and threats to sanitation, air and the
like, and I suppose anything that threatens the ability, particularly
of people in their adult years, to run families and to manage societies.
I would want myself to classify the endemic diseases of modern
society, particularly those that primarily affect older populations,
as comparatively low priority. That is to say they are terribly
important. People—it would be a good thing to cure cancer, heart
disease and the like, but it seems to me in terms of social priority,
I would want to argue that they have a comparatively low priority
and it's very difficult, I believe, to say that we have an obligation
to overcome cancer and heart disease as much as they cause individuals
suffering. I use that as an example because my family has a history
of cancer as a cause of death and certainly that brought suffering
to our family as to many other families, but I think if one takes
a social perspective on, say, death from cancer, one would have
to say that while a source of great pain and suffering for individuals,
it is not a disease that threatens the very structure of society
or the overall functioning of society.
I might mention a very interesting quote by Harold Varmus. Harold
Varmus, many people will recall, was the Director of the National
Institutes of Health, a Nobel Laureate and I think considered a
particularly effective Director. He retired—he left that position
in the year 2000 and is now president of Memorial Sloan-Kettering
in New York. In his last talk he gave to the staff at NIH, he said
something very interesting that was not picked up by the press,
but I thought was very radical for a Director of NIH. He said first
of all, he said I think we pay too much attention to health in our
society, an interesting thing for an NIH Director to say; and the
second thing he said was he was concerned that too much of the research
they were carrying out was going to produce products that Americans
would not be able to afford to buy.
And it seemed to me that was what I thought was the very first
time that anyone in a position like that began to question some
of the very basic work that the NIH has been doing.
Now let me bring in a third consideration here. It seems to me
that if one cannot say that health is an overriding good as I would
want to say, but it is one of many goods, then the question is really
how do we balance the ensemble of human goods necessary to make
up a society? Obviously, a society where you have a very low death
rate from the endemic diseases, but is one marked by social violence,
corruption and other things will be a lousy society to live in,
however healthy physically people may be. And for that society
a priority would want to be given to dealing with the social problems
of the society.
The question always would be, if one wants to say health is a
basic necessity for human beings, obviously the same thing can be
said for food, clothing and shelter and maybe a slightly less sense
of the importance of jobs and other things for society. So the
question then is to find a way to decide what priority to give to
health compared to the other goods and at the same time to recognize
that the aim of a society is to find a way to get a good balance
between all the needs and not just one.
I am particularly interested in this issue because while the research
drive has received an awful lot of money and great attention, we
have done less well with the delivery of health care in this country.
We've spent a lot of money on research, but we have spent less
money doing research on how to better deliver health care and there
has been far less public debate, much less agreement on the value
of say achieving universal health care in this country.
Harold Varmus said something rather radical for somebody in his
position. Floyd Bloom, who is the recently retired President of
the American Association for the Advancement of Science and before
that editor of the journal Science, said very interestingly
he thought we should spend less money on medical research and more
money on the delivery of health care, because we have a paradoxical
problem in this country. Namely, we have a research agenda that's
going forward to find cures for disease, but there is by no means
any guarantee that all Americans will be able to receive the results
of those disease. There are some 41 million uninsured in this country.
There are many people who can't afford the drugs that are coming
out of the research enterprise, the pharmaceutical industry and
yet somehow we can't seem to find unanimity to deal with that
problem the way we can in putting money into research itself.
Okay, so much for my thoughts on the obligation to do research.
Let me turn to the issue of balancing research against other goods
and values. Here I mean to talk very generally about balancing
research against other human needs and goods, but here I want to
particularly look at the language of balancing when, in the moral
debate, because it is often said and has been said in many government
reports that we must balance various considerations.
Let me give you some obvious examples. In the human subject debate,
the question has been one of balancing potential, harm to subjects
against potential research benefits. I'll come back to that
issue. In the stem cell debate, a very common use of balancing
language there; namely, the destruction of balancing the destruction
of early embryos against the potential benefits of stem cell research.
A third area that has received some attention lately, the protection
of privacy against the public health benefits that would come from
epidemiological and collecting information on people's health
behavior and other items concerning their health.
In short, in each of those debates, the issue has arisen, how
do we balance the potential harms of doing the research and what
harms of different kinds over against the potential values. Now
I find this very interesting, first of all because it seems to me
one can't really use the language of balance in any meaningful
way unless one has a kind of common metric, that is to say, it's
the old question of sort of comparing apples and oranges. In that
case, the issue you can talk about is the fruit, but in many of
these other cases, the differences are very great between the values
to be pursued.
Now it seems to me that unless you have a common metric, you really
can't do that in any meaningful way. For instance, by a common
metric, I mean if your physician says look, you have a very painful
condition, we have some surgery that will relieve the condition,
but the surgery is very painful, then, of course, you have a common
metric of pain and you can do some serious balancing. But in the
cases I've mentioned, the human subject research stem cell debate,
protection of privacy, we don't have anything that works in
such a tidy manner.
Now my own observation is that, lacking this common metric, and
despite the language of balancing, the de facto results of efforts
to do so have pretty much reflected the ideological, prior ideological
commitments of the people doing the balancing. I look at the language
of balancing in previous national commissions beginning with the
National Commission for the Protection of Human Subjects in the
mid-1970s through three other federal commissions and finally this
President's Council, I'll leave out this one, but the other
ones use the language of balancing, but pretty much the balancing
would typically go in the direction of the known policies, attitudes,
ideologies of the Commission Members.
And it seems to me there's probably no other way of doing
it. People will bring to bear on balancing questions their previous
commitments. Hopefully, they may have been influenced by arguments
and debate they heard, but nonetheless, they are likely to act out
some of their deepest values and that will tip the balancing one
way or the other.
And of course, one way you achieve balancing, there are a variety
of ways. One is simply decide that on the balancing of a see-saw,
one value really isn't such a high value after all and you get
rid of it entirely and thus getting rid of the problem or you find
some way to make one of less value than the other, but in point,
all I want to argue is I don't think there's any very rational
way of doing this. It ends up a matter of politics, maybe in a
good sense, but still politics rather than any form of rational
The third issue I'd like to look at is that of human subject
research. I think the history of human subject research offers
a very interesting perspective on the question of balancing and
also on the research imperative. Although the famous physician
William Osler, at Johns Hopkins over a century ago insisted on the
importance of gaining informed consent from human subjects, and
even a German Commission, interestingly, in the early 1930s made
it a moral requirement, it was only slowly and fitfully accepted
by medical researchers. Their objection over the decades, as one
might guess, was that research requires human subjects, that medical
progress cannot take progress without the use of medical subjects
and that the cure of disease took priority over any claimed rights
of subjects to be free of having their bodies invaded by researchers.
In short, there was an effort—an effort was made to look at
the problem of balancing, but by and large, in earlier decades,
probably the Second World War, the balance was always typically
in favor of the researcher and again, the arguments are rather familiar
ones. You can't do the research unless we go forward without
the consent and in any case the saving of lives and the relief of
suffering is something that is of higher value than the protection
of human subjects.
A friend of ours, Leon remembers him well, Robert Morrison, a
physician, said of his medical training in the 1930s, it was hard
to take the idea of informed consent seriously when so many of our
patients were dying all around us, particularly young people.
Well, all of that changed with the Nuremburg Trials in 1947, trials
of the Nazi doctors accused and correctly indicted for many horrible
medical crimes, particularly crimes involving human subject research.
Out of that trial came the Nuremburg Code which at its very core
had the idea of informed consent as a necessity.
Nonetheless, despite the blessing of the Nuremburg Code, it took
many years for the report really just to sink in and again the arguments
against it were the necessity of the research, the value of the
research, and one that became increasingly common, the fact that
your average lay person would simply be too incompetent, too ignorant
to make informed judgments.
In any case, over a period of time, by virtue of the Nuremburg
Code, and by other codes that were developed, the principle of informed
consent was accepted and accepted in the face of many rationalizations
to evade it. And it's very interesting because I think the
rule at present, in effect, says competent subjects have a right
to make, give informed consent and without their informed consent,
no research may go forward, regardless of how many lives might be
saved, how much suffering might be relieved. It is a hard and fast
rule. We basically get rid of the problem of balancing all together
and said this is not an area where balancing is appropriate, patients
must be protected.
Now this was, I think, a very important precedent. It said something
about the research imperative. It said something about the competence
of people, even lay people, to make informed judgments and it certainly
said something about the necessity to bring in regulation of something
very important. A number of people who believed in informed consent
such as Henry Veatch, one of the people who blew the whistle in
the mid-1960s on the problem, said it would be certainly important
that there be a moral requirement for informed consent, but the
government ought not to enter in and try to regulate this area.
It should be left to the integrity of the researcher. Well, that
view was rejected. The institutional review boards were born in
the late 1960s and it is now a firm regulatory requirement that
research be protected by informed consent.
Now I might mention that, of course, as many of you are familiar
with earlier Commissions, the issue never gets totally solved.
Efforts to this day still go on to evade informed consent. The
work of institutional reviews is endlessly being reviewed, criticized.
Nonetheless, I think it very striking that this one principle did
endure a lot of criticism and particularly criticism from those
who argued for a research imperative to do the research.
Let me end—I'm not charged to say anything about the stem
cell debate, but let me try to make a few applications of what I've
said generally to that debate. First of all, if there's anything
to what I've said, it is not appropriate to talk about a duty
to carry out stem cell research, even if you believe it extraordinarily
valuable, even if you believe there aren't any terrible moral
objections against it. It seems to me inappropriate to talk about
it as a duty. It certainly doesn't meet the standards I've
Now even if we want to say, however, it is not a duty, but simply
a high good, then the question is high how a good and how are we
to think within that context. The thing that has certainly caught
my eye is that it is claimed to be promising research. But I'm
struck by the fact that the National Institutes of Health over the
past few decades has spent literally hundreds of millions of dollars
on other promising research for the very same diseases that stem
cell research is supposed to help.
In the case of Parkinson's disease, an article a couple of
years ago listed 10 different research lines being pursued for the
cure of or relief of Parkinson's disease and certainly that's
the case with heart disease, spinal cord injuries and lots of other
things as well.
Therefore, one can hardly argue that stem cell research is the
only possible way of—unless someone once said the NIH has been
wasting lots of money on everything else over the years, I don't
think they would want to say that. One would have to say the stem
cell research is promising, but other things are promising as well
and that this might be even comparatively more promising, but promising
in and of itself is not enough to constitute a duty to carry it
out, particularly when there are alternative lines of research.
I would notice something else that people haven't noticed
which I found at least amusing. Christopher Reeve who has been
a great proponent of stem cell research, as you know, there's
been a couple of stories about him over the past year, one that
he is now able to have some movement in his limbs that he didn't
have earlier and this came from recent research on rehabilitation.
And secondly, that he is gradually being weaned from a ventilator
and this was cited as a sign of research progress on weaning people
from ventilators. In short, some of these other alternative lines
of research are working on his very condition and bearing some fruit.
I think on the question of balancing and here, this is where the
balancing issue has come in very strongly, how do you balance the
claims of an embryo against the potential of benefits from the research
itself? Well, I guess the question is one thing is pretty clear,
embryos are killed in order to carry out the research for research
that is promising, its hypothetical benefits over against at least
some real harm. Now unless one believes that embryos have no moral
standing whatever, which some do, of course, one is then left with—or believes that they have such moral standing that they shouldn't
be used at all, but if you're like many of us in sort of muddling
around in the middle there, then the question is how do you balance
off the decisive harm done to embryos against hypothetical benefits?
It seems to me that at least from the way I think about the issue,
there is one kind of common metric here, that is to say we're
talking about the potential value of the life of the embryo over
against the lives of future victims of disease. But it seems to
me the question is again, it's not a very good metric because
it's still a hypothetical benefit. We don't know the stem
cell research will, in fact, work. We do know that lots of harm
can do lots of harm to embryos to get there. So I suppose I would
want to try to think about the matter in terms of how likely are
the benefits and even if we don't believe that there's full
human life present in embryos, what do we mean when we say, as many
former Commissions have, that embryos deserve respect. I think
that is a kind of way on the part of the embryos a certain insecurity
about the way we talk about embryos, even among those who don't
believe embryos should be considered a full human life worthy of
full protection. I think the language of respect has been invoked
as a kind of middle level term, if you will, to help us say well,
we don't think they're nothing, but at the same time we
don't think they have quite enough standing to merit their non-use
for the sake of research.
I suppose I would want to end by saying on this issue and here
I will simply end by saying this, I think embryos have a fairly
weak moral claim, but on the other hand I think the research claim
is even weaker. Thank you.
CHAIRMAN KASS: Thank you very much, Dan.
Let me just simply throw the floor open for comment. Elizabeth,
is that half a hand, Elizabeth Blackburn?
PROF. BLACKBURN: I would like to address the points that
you raised in the last part of your presentation. With respect
to stem cell research, you point out that the NIH has, of course,
spent very much more money on different kinds of research avenues
from stem cell research. But I think we should acknowledge that
the reason for that has been partly because there has not been the
possibility to do very much stem cell research because of the situation
being so limited right now.
So it's not that the stem cell research has been abandoned.
It's being sufficiently useful compared with other avenues to
pursue it. It's simply that we at this stage haven't had
the opportunity, we as a society, to look into it.
I think it's early days. And you pointed out that there hasn't
been a whole lot of evidence about how useful it can or could not
be, but again, the only way to find out that is to gain the knowledge.
So I think I was getting from you words somewhat of a sense that
you were thinking that extensive research was the inferior mode
of research. And I was just going to point out that we really don't
know that at this point because we have not had the opportunity.
Another quick point I wanted to raise about Christopher Reeve.
I think that the news is wonderful that the injuries that he had
were in some way not completely irreversible, but I think that what
he acknowledges is that he was in a rather unusual position of having
a lot of resources. And he could devote enormous resources, financial,
into having the very, very intensive sorts of effort put into his
rehabilitation, which I think is not commonly the situation for
And so if there were alternatives to this route that he was able
to take, which was heroic and very encouraging, I think that would
be better because these people do not have Christopher Reeve's
large amount of resources that he could sink into his rehabilitation.
So those are the couple of points I just wanted to raise.
DR. CALLAHAN: Well, let me first point out I in no sense
meant to imply that stem cell research is inferior, in fact, it
may be superior to all the others. I was simply making the point
that NIH already is pursuing other things that they consider very
promising as well.
Stem cell would be one more thing added to the list. It might
be better than the others, but unless we think they have been wasting
money over the years, the NIH has believed that other things are
valuable and worth pursuing as well.
With Christopher Reeve, you may well be right, but much of that
research, the benefits came out of NIH-sponsored research. How
it got paid for with him, I haven't the faintest idea.
But, again, this gets back to Harold Varmus' point. It may
well be that a lot of the research will develop things that only
well-positioned, affluent people will be able to afford. But that
is a side issue.
PROF. BLACKBURN: I think the point was that his current
one was such an expensive kind of therapy. And if there were cheaper
ones that might be more readily accessible, that would be—
DR. CALLAHAN: Sure, sure.
CHAIRMAN KASS: At the risk of perhaps deflecting people
from where they would like to go, it seems to me the real challenge
that Dan's paper and presentation throws out for us is to think
really about the large theme, which is the moral imperative to research.
And I wonder what people think of the general thesis of the presentation
as stated. And the use also of informed consent at least indicates
that, if I understand Dan's argument, there were certain kinds
of trumping limitations that indicated that the imperative to research,
if there were one, or at least the pursuit of research, if there
were one, simply wasn't the sort of thing that trumped all other
kinds of considerations, including moral considerations. I wondered
what people make of the general thesis that has been presented.
PROF. FUKUYAMA: Well, I appreciated that presentation
because it really made me think about a lot of things, but it does
seem to me that fundamental to your argument is actually not the
question of the value of research per se, but the value of biomedicine
directed towards basically curing diseases in old people that will
add, say, another five years of life expectancy to a population
whose life expectancy has already been pushed to a fairly high limit.
And the value of that compared to other things because you are
willing to say, well, infectious diseases that affect younger people
I guess in your mind actually do trump quite a lot of other moral
DR. CALLAHAN: Not informed consent, however.
PROF. FUKUYAMA: Not informed consent, but you're willing
to concede that. So it seems to me that that is really the focus
of the issue, the relative value of biomedical research directed
towards that particular population. And that becomes, then, a kind
of metric by which you can value one type of research over another.
Isn't that the basic—
DR. CALLAHAN: I guess to me the fundamental question is,
what are appropriate goals of medicine at this stage in history
given the fact that we have already made great progress, given the
fact that most people now die in old age, rather than as young people.
Where ought we to be going? That's the basic question.
And at the same time, though, I want to say that I think it's
been given an excessively high evaluation. And I would simply want
to bring it down a little bit and put it on a par with a lot of
other things we could usefully spend money on.
CHAIRMAN KASS: Frank, do you want to pursue that?
PROF. FUKUYAMA: Yes. I think that that's really in
a way a core issue that we ought to discuss much further. I remember
once hearing the director of HHS saying that heart disease is down,
mortality from heart disease is down, and a number of other diseases,
but, unfortunately, mortality from these other diseases is up.
Now, it seems to me even the director of HHS should be able to
figure out that the total of mortalities from all diseases have
to sum to 100. So that if you actually cure some diseases, you
will be raising the rates of mortality from other diseases unless
you can presume that they are not going to die.
So, really, what you are talking about is, in a way, this whole
life extension issue and the kind of value that.
DR. CALLAHAN: Implicitly, that certainly arises, yes.
Well, it's also there's another issue, which I have written
about in another case and gotten in trouble for writing about, namely,
what is our obligation to the elderly given the fact that the average
age of cancer deaths is at age 69 or 70 now. So it is clearly a
disease of the aging.
Should we continue giving it the high priority it had by virtue
of the fact that it's mainly older people who have it, as with
spending on money on young people to improve the schools? Which
is the greater social contribution?
PROF. FUKUYAMA: And I would just point out that among
the complexities of that, you get into all of these quality of life
issues. One of the reasons that there has been this explosion in
rates of Alzheimer's is that you have actually succeeded in
other areas of biomedicine, keeping people alive long enough that
they can get to an age where they are much more susceptible to that.
So it seems to me the total good that is being delivered to society
by some of these advances is much more problematic. And I think
that's a perfectly reasonable issue to raise.
CHAIRMAN KASS: Alfonso Gómez-Lobo and then Bill
DR.GÓMEZ-LOBO: I have a concern and a question,
but I would like to preface that with a broad agreement on your
approach. I think there's deep wisdom in placing the question
within the ranges of goods.
And I totally agree. I seem to see an emphasis on health, which
may not be reasonable in the long run. I mean, we are surrounded
by other goods. And we may be neglecting lots of other social goods
by emphasizing that.
Now, what I think is very important is to say there is a limit
to the balancing. In other words, that balancing goods is something
that is reasonable when the pursuit of those goods is morally permissible.
And there I think—and I totally agree with you—the notion of
informed consent plays a very important role because that's
the nonnegotiable limit, right? You don't balance that in any
Now, here is my concern and my question. I have seen since I
have been on the Council and reading some stuff that informed consent
is sometimes extended to the treatment of children and then also
to the disposal of, say, frozen embryos.
What I am doubtful about here is whether there can be valid informed
consent for actions that will not benefit the subject. And I would
love to hear some clarification of that.
And, of course, that ties into your last remark, the remark about
the embryos having a weak moral claim. And I want to ask you, what
does that mean? And if it's weak, how does it become stronger
and say how strong would that be in an infant? In other words,
does the notion of varying moral claim for drastic action, like
the action of killing, really make philosophical sense? That's
the question I would like to raise.
DR. CALLAHAN: Well, your last question bears on the whole
discussion, the rest of this meeting. I mean, I could say a lot,
but let me say very briefly I think by "weak moral claim,"
I mean a claim where we are uncertain about the moral status and
we are uncertain about how great the harm being done to that moral
status might be.
By "weak claim," I mean a claim somewhere in between
saying embryos are worth nothing and embryos are full of life we
claim is one that is somewhere in between. It is something. It
has some value, but we are not quite sure how much value.
And we may on occasion be willing to say it might be overridden
by other considerations. That's all I will say on that. I
would just as soon not have to get further into that.
I'm sorry. You're first—
DR.GÓMEZ-LOBO: The other point was about consenting
to an action performed, say, on a child or on an embryo that would
not benefit that child in—
DR. CALLAHAN: Well, that's a hot area that has been
disputed ever since the Nuremburg trials because there are incompetent
people doing research and somebody with Alzheimer's disease
doing research and children, people who are not in a position.
I think it's generally agreed that you may have to indeed
do the research, it's valuable research, but there you have
to depend upon a surrogate giving you permission, somebody you believe
is competent and capable of giving permission for the research to
be carried out on that person, the condition being that the person
is not able to carry out the research and that the research would
Now, on your question of non-therapeutic research, I don't
see any reason why a competent person can't agree to be part
of research. It is not going to particularly help that person.
I was part of a research project on amphetamines myself at one point.
It had nothing to do with my health at all. And I think I was able
to give informed consent on that subject.
So the question of consent for embryos, well, that's a whole
totally murky kind of area. I don't think obviously you can
give consent for an embryo because you have no idea what that embryo
might have wanted, where it's going, or anything else. I am
going to put that question aside and not even try to mess my way
through that, which would be a confusing business anyway for me.
DR.GÓMEZ-LOBO: Yes. I'm a little bit disappointed,
because that is exactly the kind of guidance—
DR. CALLAHAN: That's not my charge at this meeting.
And I will give you references I have written on that, but I can't
do it in three or four quick sentences.
CHAIRMAN KASS: Bill May?
DR. MAY: The paper and the presentation are offered with
your characteristic reasonableness. I would simply like to explore
the question of the place that you give to research imperative in
the setting of a metaphor, a fight against death and understanding
of death as a contingent, accidental fact and, therefore, the tension
between that research imperative driven by that military metaphor
with what you call the clinical imperative, at least the old clinical
imperative. You're talking about an imperative directed at doctors.
I'm not sure if that is what you mean or patients where the
imperative is to accept death as a biological fact.
Now, it seems to me what this leaves out, that gives heft to the
research imperative, is a further structural characteristic of death,
that death is uncertain but uncertain as to time when— Heidegger
worked all of that out. And behind that was Kierkegaard.
Uncertain as to time when creates a huge opening that allows one
to give the impression that one is fighting against death. But
one really creates space for the avoidance of death.
We send people to hospitals so often because that is where the
battleground is located and where we have got people equipped to
fight against that. And if they don't have all the resources
behind them, it's research so that if it isn't successful
with this patient, it will be successful with future patients, all
But the other deep response to death is not simply fight but flight
or avoidance. And so the military establishment fighting against
death offers an important psychological service to patients.
Yes, it's certain but in a sense uncertain as to time when
this is going to happen. And there are still tricks that the doctor
will have and so forth, so that push in the direction of orienting
even what goes on in the clinical setting, to if not curative efforts,
delaying efforts and so forth.
Now, what this leads me to think about is a huge shift in the
religious landscape from earlier centuries, a West shaped by a notion
of a creative and nurturant God.
And purportedly the authentic life was to be open to this deity
and then two forms of reaction to this deity, which were defined
as sin, fighting against God, Luciferian revolt against God, and
avoidance of his presence. That was Philistine flight. So you
had a fight and flight response in relationship to the deity.
One might argue that the religious landscape of the last couple
of hundred years has shifted over that the encompassing reality
is not a creative, nurturant God but what James Joyce referred to
as dio boia in "Ulysses," the hangman God, or Camus said,
"The whole world is organized by death. In the end, we're
all done in."
And then you get people like Kubler-Ross saying, "Hey, let's
be open to this. And, indeed, being open to death, finally we're
open to ourselves at our deepest level." And she gave, in
a way, Heidegger-on-the-cheap there.
But, on the other hand, the terrific attraction of fighting against
death and, further, the compounding of that that you set up an apparatus
of fighting against death that offers people the sense that we don't
get heft to face it. So avoidance, at a deep level, helps drive
and give heft to the research imperative.
The way you have written this chapter, it seems as though the
research imperative is driven by the military metaphor and then
spills over into the clinical setting when I think the existential
setting is quite the reverse for people, that it is certain but
uncertain as to time-when. And there were things to be done in
the hospital that I can't do at home. So you put them there
and so forth. So it allows one not to have to face it yet.
Now, yes, medicine ought to recover that old, old imperative,
learning how to accept finitude and death. It was very difficult
to do in a setting where one really feels that ultimately one is
facing a hangman God.
The kind of religious background, it seems to me, would ask one
to talk about the drive behind the research imperative. That may
be at a deeper level and more complicated level of our attraction
to it and the temptation to it.
DR. CALLAHAN: Well, just a quick response. It seems to
me that, even if one accepts the reality of death, it's seemingly
understandable that we would like to stall things a bit, take our
But this is true of a lot of things that are rather unpleasant.
We avoid and we flee. When the doctor says, "Well, you have
to have your tooth pulled," we say, "Well, how about next
week, rather than tomorrow?" and so forth and so on.
I think the question of the research imperative is—the way I
like to put it is whether we ultimately believe that death is kind
of a biological accident, a contingent event that ultimately can
be overcome as distinguished from simply forestalled.
And it seems to me that the whole trajectory of modern medical
research has been basically to treat it as if it were an accident.
As far as I know, there are no fatal diseases that the NIH finds
acceptable. The NIH is not in favor of immortality, at least officially,
but there are no diseases that kill people that it is prepared to
tolerate. And it puts money into research, any and all lethal diseases.
So the logic of that whole movement is—
DR. MAY: Long before there was modern research, you got
Frazer and "The Golden Bough" talking in traditional societies,
a tendency to look upon death as an accident; or in Freud, the eagerness
to find out the cause of death because it is an accident that befell
somebody else and not me or you get the same thing again in Tolstoy's
"Death of Ivan Ilych."
DR. CALLAHAN: But I think with contemporary medicine,
we get a new plausibility to thinking that way. That's the
CHAIRMAN KASS: Rebecca Dresser, then Paul.
PROF. DRESSER: I share many of your views and concerns.
And I think I am so happy that you are writing about this in your
usual eloquent and elegant way.
I had two questions. One is, you alluded to this but didn't
speak to it directly. Something that I think goes on is the equation
of provision of proven health care with money for research in the
political setting and sort of public ethical debate.
I take it you would see those both as goods. And so then the
question would be weighing and saying which should have priority,
but I wonder if you can comment on how you might weigh those two,
the provision of proven health care to more people who don't
get access to it, versus money for research that might improve the
health care we have available now, but at the same time leaving
more people without it.
And then my other question was about procedures, sort of at a
practical level. If we are to try to make progress toward revising
priority-setting in these social programs, any ideas how we might
go about doing that and the role of lobbying and all of this? Any
thoughts in that direction?
DR. CALLAHAN: Well, let me begin with your second question.
I like the system used by the British government. Of course, they
have the National Health Service. It's financed by the government
and run by the government. But I gather that a part of their annual
budget-setting is that the different social areas have to compete
against each other. They have an open debate: education versus
health versus economic development.
I would love to see that. Even if done informally, I think it
would be terrific if somebody could have a great television program
getting people, leaders from the different sectors and say, "Okay.
You want more money for education. Are you prepared to say less
money for health?" That would really put everybody on the
spot. I think if we could get that in open debate, it would be
I think on your first question, I think one major reform that
I am in favor of in the priority-setting area and in support of
research is that we really now need to look very carefully at the
economic consequences of research.
Right now recently Medicare had some hearings to look into new
heart technologies that are going to very radically increase the
costs of treating heart disease. And the question is, which ones
should Medicare cover?
Now, typically that is done more informally, rather than as a
public debate. I would like to see that done openly. I suppose
my most radical suggestion would be that those companies that manufacture
new devices and new drugs must, at the same time as they are doing
safety studies and efficacy studies, be doing economic studies and
saying, "This is our projection of the economic impact of doing
this" and before the technology is released.
The typical procedure now is technologies are developed. And
they're sort of thrown out of the window. And they say, "Okay.
You health care administrators sort of deal with it. That's
not our problem." And I would want to say we should make it
And I suppose if you want to go really far, you would say no technology
or at least to be reimbursed by the government until it has had
a very solid economic analysis and debate and some consensus on
whether this is economically worth advancing.
Now, the typical attitude of researchers is, well, a) that's
not really their problem; and, b), after a while, we find ways to
pay for things anyway. And this will hold up research.
Well, it probably would hold up research, but, an issue that didn't
come up at all, I happen to believe that research is one of the
main things that drives up costs, that right now we are seeing cost
inflation 10 to 15 percent a year.
The estimate is 40 to 50 percent. It's coming from new technologies
or intensified use of old technologies. If that's the case,
then I think we have to very squarely face the problem of the research
behind those technologies and learning how better to evaluate the
new technologies that come on line. And all of that is set within
the larger context of comparing health with other things in society.
But I think more generally, it seems to me a really tragic situation
when we have — to me, the worst arguments around are those
on the part of the pharmaceutical companies that say, "We need
these high profits to save future lives" when, by God, if they
bring the price down, they could save lots of lives here and now
in Africa by making their drugs available.
So that this notion of these wonderful lives in the future somehow
comes at a discount rate for the future. They're basically
saying, "Oh, no. These lives are worth more in the future
than the present lives we could save now." And the drug companies
simply dodge that issue altogether.
CHAIRMAN KASS: Paul McHugh? I have a long queue. I will
try to get to everybody before the break.
DR. McHUGH: Well, I also want to thank you very much and
was looking forward to your presentation because I have read your
work for a long time and expected, actually, to find just what I
found this time, that I agree with so much I am surprised at what
I disagree with.
Let me develop my disagreements, at least to the point of talking
about them in practical terms. I speak now as a person who has
run a laboratory and also a person who has been a director of a
clinical academic department.
In this arena that you have laid out for us of discussing the
value and the value of research in relationship to, is it a moral
good, or is it an imperative, you first wanted to talk about it
in relationship to cost. And it's that point I want to bring
up first, that even if it's a good, just a small good, anyone
who has had any experience with research, basic science research
or clinical research, knows what the problem for our country is
in relationship to its financial support.
The growth of investigators and the growth of reimbursement is
a Malthusian problem because laboratories grow and replicate themselves
with their students in an exponential geometric way.
And anyone who has run a laboratory begins to notice that he or
she has many of these wonderful postgraduate students. They grow.
They become directors of their own departments. And they become
steadily more expansive in bringing many more opportunities to our
world because of that. But tax money and money from the country
can only grow arithmetically.
So there is always going to be this problem that you raise. Why
is it that the legislature, the things closest to the people, closest
to the citizenry, will always overrule the executive, ask for more
money because more money is going to be needed for whatever, whether
it is an imperative or a good, only to do that to our country?
On the other hand as well, it may just be my perspective about
your work and your presentation here, and it might be just a prejudice
on my part. And so we'll accept that at the beginning, but
you've got to begin somewhere with a prejudice. And that is,
how would I, who think of research as an obligation, a moral obligation,
approach that from my experience? And what is research or why research
or how to judge research are the issues before us in relationship
to is it a good or a moral obligation? And I would like, of course,
as you would, to produce, for example, one piece in this scale,
namely the achievements in research over these years.
Now, you mentioned the wonderful achievements we have had, at
least in recognizing the cause of the AIDS epidemic and developing
very effective medications for them. I lived, like any doctor who
has lived, with the AIDS epidemic from its earliest beginnings right
now, when everyone thought that nothing could be done because it
was a viral illness, and now out to a place where I am taking care
of a vary large number of people who carry the HIV virus but are
protected from the things which were discovered.
In my area of work, of course, in psychiatry, the results have
equally been remarkable, really, with research that is sometimes
developed by accident but sometimes developed out of reason.
Those results are not just the reason for wanting to speak about
it. I also feel that both attitude and educational communities
do not thrive unless there is research going on within them.
Again, I ran a clinical department. And the very great importance
of mingling investigators with the clinicians was to raise the standards
of care offered to the patients and very much raise the standards
of discourse amongst the clinicians about what they were doing and
why they were doing it.
Now, in psychiatry, we have this in vivid terms described to us,
demonstrated to us by the neglect of research during the psychoanalytic
era, what Ed Shorter has referred to in his book on the history
of psychiatry as the great hiatus in psychiatry when during the
psychoanalytic era, essentially no research was done because everybody
thought they knew the answer. Okay?
The result of that era was the neglect of patients, the development
of snake pits, the concentrations purely on the worried well, and
the loss of opportunities in neuroscience and pharmacological work
to do it.
And for psychiatrists like myself, I have come to believe that
there really is an absolute moral obligation to have this in our
discipline and in our departments.
And, finally, the very attitude that all of this ultimately produces
for us is an attitude of not only optimism for the future but also
an attitude of criticism for our views at the moment.
So for all of that, I think you have laid out a very interesting
point. I have to say that there are some fairly fundamental disagreements
that I have with the conclusions you came to draw. I hope you will
accept it in —
DR. CALLAHAN: Well, I guess if you want to continue to
use the word "obligation," fine. But then I would ask
you, is the obligation to do research in your field — and
it is not a coincidence that you feel it in your field and not my
field. I feel an obligation for philosophical research probably
as strongly as in psychiatric medicine.
DR. McHUGH: Oh, I think that —
DR. CALLAHAN: I put that aside. But how do you compare
with the obligation better housing, community, national defense,
safety nets? I mean, my question is, do you want to give it an
overriding priority? Do you say that this is worth far more money
than anything else or it ought to be put on the scale and compared
with the other obligations?
DR. McHUGH: Well, you know, once again, in a democracy,
we have issues of competing obligations, competing with values.
And my assumptions are going to be that we should be trying to meet
all of those obligations as we see them and as we interpret them.
That is how I am going to do it. And that is why I am in America,
where we can earn the money to do it.
CHAIRMAN KASS: Michael Sandel?
PROF.SANDEL: Well, this follows, Dan, on your discussion
with Paul just now. I think there is something needlessly puzzling,
confusing about the pieces you present that obstructs what I think
is really a very important insight that you are directing us toward.
So let me first say what I take to be one of the really interesting
directions that you have given us and then say what I think is puzzling
and wrong-headed about the way you have put the thesis.
By calling into question the research imperative, you have raised
a bigger question lying in the background, which you mentioned at
the beginning of your talk, about the inflation of health as a moral
and social good in our society. And Bill May gave I thought a fascinating
interpretation about the existential landscape that might partly
account for this dynamic.
There may also be — and this is just a speculation—a shift
in the moral and public culture that contributes to this. It might
be that the more reluctant we become to pass judgment or publicly
to affirm what makes lives worthy or good, the more likely we become
to affirm what we take to be all-purpose means to any lives.
So the inflation of health may be a reflection of a non-judgmental
impulse that has entered into the moral and public culture over
the past 40 years, roughly the time that you detect this inflation
Health is something we in a pluralist society can agree on because
we take it to be necessary to the realization of just about any
ends that people might pursue, against the background desire not
to affirm any particular ends as aims of lives.
And you have directed us to this whole question. That may not
be the best or the only explanation. But you have directed us,
I think rightly, to this very important phenomenon about the inflation
of health as a social and moral good.
The thesis, what makes the thesis confusing and puzzling, even
to those of us who want to sympathize with it, is that you really,
as I understand, are saying two things. First, there is no moral
obligation to pursue medical research. That seems to me wrong.
There is a moral obligation to pursue medical research.
Then you are also saying another thing, which you take to be the
same, which is medical research is not an overriding good. It doesn't
trump all other goods. It has to be balanced. Well, that is surely
right. And I suspect everyone would agree with that, but those
two claims aren't the same. It's perfectly possible for
something to be a moral obligation and still, as Paul says, for
there to be competing moral obligations.
Consider other examples outside of medical research. There is
an obligation to educate the young, to prevent starvation, to save
innocent lives where we can, to oppose injustice, to protect the
security of the country. Those are all obligations. But to call
them and to recognize them as such isn't to say that any of
them is an overriding good in the sense that its pursuit trumps
all other considerations.
So I think that you could win wide support for your thesis that
medical research is not an overriding good. It has to be balanced
against other competing goods without making what seems to me a
puzzling and unnecessary claim that it is not a moral obligation.
DR. CALLAHAN: Well, the reason I was trying to deal exactly
with that confusion, which is the difference between a perfect and
an imperfect obligation, when people say there is a duty to do stem
cell research, they're giving it a very special status. They
are saying that somehow: a) we ought to do it; and b) others can
make a claim against us that they have a right that the duty be
I would want to say most of these obligations are rather nonspecific.
Yes, we have an obligation to raise children well. We have an obligation
to our national defense and so forth and so on.
But I guess I want to say that you can't use the language.
You can't make it a very specific kind of obligation because
you then have to say, who is the one who has to carry it out?
If you want to say there is an obligation to carry out research,
who has the duty to do that research? Do we as citizens have a
duty that we must put up the money for it? Does the researcher,
young researcher, have a duty that he must go into the field that
will deal with XYZ problem?
It's narrow and very specifically goal-directed. The imperfect
obligation it seems to me is the more general one. So I put it
in the category of the imperfect, not the perfect.
CHAIRMAN KASS: Very quickly, Michael, we're at the
break time. Let me ask the remaining people. Dan, are you okay
for another ten minutes? I know you have a plane to catch?
DR. CALLAHAN: Yes. Unfortunately, I came from vacation
on an island in Maine. You can't get there from here or back
to there from here without leaving soon.
CHAIRMAN KASS: Seven minutes?
DR. CALLAHAN: Yes.
CHAIRMAN KASS: We'll ask people not to run over so
the people in the queue can speak. I have Gil, Mary Ann, Janet,
and Dan Foster.
PROF. MEILAENDER: Just quickly, Dan, I wonder if I can
get you to think with us just a little bit about the structure of
your argument because it seems to me there are a couple of aspects
The one aspect that flows out of the language of imperfect obligations
is to start from goals, really, aspirations that we seek to realize.
And there are many such goals that we think of as goods. And we
often, contrary to Paul's American optimism, we can't fulfill
all of them.
That in some ways becomes a process of political argument, then.
And that's, in fact, what you have advocated. You would like
to see more overt political argument. There is not necessarily
any single answer that has to be given to how we should weigh defense
and medicine and education and so forth.
It is also true, your talk about informed consent suggests that
in terms of the means to those goals, that there are occasions when,
even when a clear good could perhaps be realized, one has to forego
it simply because the means to it is prohibited. And that's
what the principle of informed consent accomplishes.
I just wonder if that doesn't need a little more emphasis
than you gave it, in a sense. If there is not a research imperative,
to use that language, then I don't think the primary reason
is that we have a number of goals which we have to weigh and that
sometimes health care might come out not at the top.
The primary reason is that we have accepted, and I think in some
ways the research community has accepted, the fact that there are
certain things that ought not be done even to achieve a certain
kind of undisputed good. That's where you simply can't
claim that there is an imperative to do it because there is some
other imperative that really does trump it and is overriding.
So, insofar as there is not a research imperative, it seems to
me that that fact grows primarily out of prohibited means, rather
than simply out of conflicting ends or goals. Doesn't it?
DR. CALLAHAN: Well, it seems to me that you can say that
informed consent itself is a kind of moral imperative. And it's
over against the research imperative.
I guess I want to argue that the research imperative is troublesome
when it is taken to have the power to overcome those moral obstacles.
That's when it seems to me it causes trouble, moral trouble.
And it basically says it is such a high goal that the means don't
matter, that it is worth achieving because what you are doing is
of such ultimate good.
PROF. MEILAENDER: But you've actually got a duty of
perfect obligation in the requirement that you respect informed
DR. CALLAHAN: Well, in that particular case, because you
have a trust relationship between a doctor and a researcher and
a research subject, in that case, you have a situation of perfect
obligation because it is a much more narrow contractual relationship
PROF. MEILAENDER: Not just because of the narrow relation.
Because every human being has a right to claim that over against
DR. CALLAHAN: But that's exactly the point. They
have a right to claim it against researchers because we agree that
there is a particular relationship that ought to obtain between
researcher and subject. And we, therefore, have put it into the
category of a perfect obligation; whereas, earlier, I think it was
not seen that way. That was what the whole debate was about.
CHAIRMAN KASS: Mary Ann and Janet.
PROF.GLENDON: I want to thank you very much for giving
us your expansive vision of bioethics as including, among other
things, the ethical dimensions of the choices we make about what
social goods to pursue, and I just want to see if I can make a little
extension of your argument. You have told us that research is a
good to be pursued among other goods and that there are difficult
problems of choosing among those goods.
The extension I would like to make is that in setting priorities
among those goods, if you don't set them thoughtfully, and after
deliberation, then they are going to be set by default or by the
influence of special interests. Would you accept that as—
DR. CALLAHAN: Oh, absolutely.
PROF.GLENDON: And so some of the references you made to
what happens in other countries suggests that there is more of a
process of deliberation and balancing in some other countries than
there is here within the democratic forum.
Of course, a cynical side of me says, "Well, yes, European
countries can, just as they do with defense spending, let us spend
the big bucks on medical research. And then they have the luxury
of democratic deliberation about education," et cetera.
Nevertheless, the question I come to is, why do you think it is
that it is so difficult in these discussions to get a public debate
or even a legislative debate of the type that you mentioned happens
in England, a discussion of the pros and cons of pursuing the various
good things in a world of scarcity?
DR. CALLAHAN: Well, to me the great difference between
Europe and the United States is, at least as far as health is concerned
and a lot of welfare programs, the government actually runs everything.
They either control the financing or financing and delivery as
well. And that means they have to work within a closed budget.
And once you're forced to work within a closed budget, you then
are forced to deal with priorities. You're then forced to deal
with rationing, saying some things are comparatively more or less
By virtue of our strange mixture of the public and the private,
we have no way to have a rational discussion because you have so
many different actors with different rules of the game.
I mean, the whole private sector can go out and develop all sorts
of things medically and technologically, which are absolutely beyond
the control of any government or any regulation; e.g., private stem
cell research, private human cloning if they want.
Under those circumstances, it is very hard to set a budget. It
is very hard to have a rational discussion. And it is very hard
to have any kind of unified outlook that enables you to set priorities.
Now, the National Institutes of Health has set a priority discussion
and for a very simple reason. They have to live within a budget.
They get a certain amount of money. And they then have to decide
how to spend that money. So priorities are forced upon them. But
we don't have a country that is run like the National Institutes
So that's why I happen to think government is a good thing
in this area because the market does not enforce discipline. The
market forces profligacy; whereas, it is the government's and
closed budgets for discipline and priority-setting. We don't
CHAIRMAN KASS: Janet Rowley and Dan Foster.
DR. ROWLEY: Well, I appreciate the thoughtfulness with
which you have prepared the material. I have to say that I have
very serious reservations, some of which were already expressed
in a sense by Paul.
To me, the use of research imperative implies that there is some
direction of this imperative and an agreement to its goals, even
unstated. And it seems to me this does not reflect the real world
of science or biomedical science as I have lived it for over 40
Your statement just now about who is going to tell a scientist
to do stem cell research, that is not the way science is carried
out at all. It is true it is carried out that way in companies,
but in the academic world, which is where fundamental research is
really flourishing, the scientists are the ones who have the intellectual
curiosity and the creativity to say, "Isn't this an interesting
question?" and to follow up on it.
I think Liz Blackburn is a wonderful example of somebody who was
studying how the ends of chromosomes in yeast were formed and maintained
and discovered the enzyme telomerase. And now this turns out to
be a very important enzyme in cancer. But who would have expected
research in yeast to then have that kind of applicability?
So there is no direction necessarily in medical research. It
is what scientists find interesting. Now, it is absolutely true
that many of the interests are channeled by research questions that
are considered to be very important or research areas that are the
hot topics. And if you are a young scientist, that is what you
want to do because that is where the action is.
But I just don't think that there is a research imperative.
So I think that your example of NIH and their following many different
ways of Parkinson's, in part, that is because there is no good
answer. So you try all of the options, hoping that one or a combination
of options will really give you greater insight that will allow
you, then, the next step to go beyond.
And I realize you have a plane to catch, but I want to come back
to Alfonso's question of non-therapeutic research on children.
I want to point out that our understanding now of how babies learn,
of how infants learn, of how different aspects of the nervous system
mature at different stages and allow infants to gradually respond
and observe, is all done by research, non-therapeutic research.
And it has led to enormous changes on how we look on babies and
how we look on intelligence.
So you have to put these in the context of what it is that you
are doing, what is the goal. It may not benefit that baby, but
it sure is going to benefit babies down the line.
CHAIRMAN KASS: Dan Foster. Why don't we take both
questions, Dan, and then we'll let you comment?
DR. FOSTER: Well, I will give it to you that the Council
seems to have their loquacious genes fully on this morning. As
a consequence, I am going to bring it back towards the mean by depriving
the Council of my remarks, which were really of eternal significance,
but I am not going to—
CHAIRMAN KASS: Do you want to follow that? Why don't
you respond to Janet?
DR. CALLAHAN: Okay. I certainly wasn't claiming that
the research imperative has goals. The research imperative in its
benign sense I simply mean has a very strong sense within the scientific
community supported by the American public that research is a good
thing that ought to go forward. And we ought to put money into
it. And that's what I mean by the imperative, that this is
a valuable thing that should be carried out. That's all.
The goals are all over the place. People have different goals
at different levels and so forth, so on. And, of course, you are
someone who spoke for the research imperative. Your scientific
colleague said exactly sort of what I was saying.
CHAIRMAN KASS: Council members, we have run over. We
have a guest waiting to speak. Let's return at five minutes
of 11:00. Dan Callahan, thank you very much for being with us.
We're adjourned for 15 minutes.
(Whereupon, the foregoing matter went off the record at 10:41
a.m. and went back on the record at 10:58 a.m.)