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Oral History of the

Belmont Report and the

National Commission for the Protection of Human Subjects

of Biomedical and Behavioral Research

Interview with

Robert E. Cooke

Chairman, Department of Pediatrics

Johns Hopkins School of Medicine

Baltimore MD

May 15, 2004

Belmont Oral History Project

**INTERVIEW**

*Interviewer: Dr. Bernard A Schwetz, D.V.M., Ph.D., Director, Office for
Human Research Protections*

DR. COOKE: I\'m Dr. Robert E. Cooke--now retired, but formerly a
chairman of pediatrics, Johns Hopkins, and then subsequently at a number
of other positions.

I had been an advisor to the Joseph P. Kennedy Foundation for some 45
years and have had a personal interest in the problems of children,
obviously, having been head of a large department of pediatrics; and
also a personal interest in children who are intellectually disabled,
with two profoundly retarded children of my own.

Fortunately, I have other children who are normal, and actually are
pretty good athletes. But my interest in the field comes very naturally
from both my relationship to the Kennedy Foundation and also my
responsibilities as a pediatrician.

*INTERVIEWER: Dr. Cooke, when did you personally become interested in
questions of research ethics?*

DR. COOKE: Well, I think it almost goes back to the birth of my retarded
children, because at that time there were absolutely no services
whatsoever. And the care of children like mine was really pretty
atrocious in institutions, so they lived with us for some 18 years.

And all along, I\'m looking for evidence of interest in the field, with
very few people\--medical students knew nothing about problems of these
children, and most medical schools did absolutely nothing about the
issues. And that, I think, generated a good deal of interest, at least
in that group.

And then as I went on doing research through the years, before moving to
Johns Hopkins, I carried out experiments, which I talked about that, I
think, looking back, were anything but meeting modern ethics. And as I
matured, maybe, I realized that what we\'d been doing was very helpful
to the world, but very unfair to the subjects that we worked with. And I
think that kindled my interest.

I also had the opportunity to spend a year at the Harvard Divinity
School, working with Arthur Dike, who is a very distinguished ethicist
at Harvard, and that certainly kindled my interest.

Probably the most significant experience I had was when I was chairman
at Hopkins, we had the birth of Downs Syndrome baby, and the parents did
not want to have surgery done. This child had duodenal atresia, which is
a total blockage of the intestinal tract\--easily remedied by surgery.
They refused. The surgeon wouldn\'t go ahead with it. And so the baby
died.

Another similar situation came up later, and the opportunity to make
people aware of the problem of letting a child die--totally
needlessly--and we made a film of that particular case, which I\'m told
had enormous impact on whole field of ethics. It was really a remarkable
experience.

As a kind of anecdotal experience, when I was teaching, I remember
picking a jury from my class, and telling about this case, and then had
them vote. And they all voted to let the baby die, because that\'s what
the parents wanted and so forth, and why burden them. I then showed the
film, and the jury switched its votes completely, and they were all for
saving the baby, even thought the parents didn\'t want it.

In a subsequent case, we kept the baby alive; found a foster home, and
about two months after that, the parents took the child back, and it\'s
become one of the joys of their life.

That film has had a major impact on the field of bioethics. It was first
shown in 1971.

The Hopkins case\--the second case, that led to this, was actually only
about a year before the symposium where this film was first shown. And
the people in that film were the actual nurses and physicians. One of
them\--a man named Bartholomy\--Bill Bartholomy\--it affected his
career, and he went on to become very distinguished ethicist, particular
interest in children.

And I think it really did influence the field enormously.

It\'s a real-life example of an application of ethics to the problems of
children.

*INTERVIEWER: You pointed out in your talk that Senator Mondale was the
person in the late \'60s who was raising these questions and holding
hearings. And in the early \'70s, it seems as if the mantle passed to
Senator Kennedy. How and when did Senator Kennedy first become in
questions of research ethics?*

DR. COOKE: Well, actually, the first symposium in which that film was
shown was the inauguration of the Kennedy Center. Senator Kennedy was
the host, in a way, and introduced the program. And, of course, his
family, for a considerable period of time, had a foundation which was
dedicated to the well-being of children, and particularly the well-being
of children and adults with mental retardation. And he was chair of the
board of trustees of the foundation after President Kennedy was the
initial head of the foundation, and then Senator Kennedy took over after
his death. So, it was a pretty natural thing that he would be concerned
with these issues.

He also had a staff member\--Dr. Larry Horowitz\--who was a well trained
physician, and he handled much of the early legislation. It was a
wonderful spirit of bipartisanship. Jacob Javitz was very interested.
Paul Rogers, in the House of Representatives, too. But I think Horowitz
probably ought to get the major source of credit for really developing
the legislation.

My part was, I think, pretty minor. I was obviously concerned about
children, and about the mentally retarded. And so those two sections
were an integral part of our studies. And why, I\'m not sure, but I
insisted that behavioral research ought to be included. It was
originally just biomedical, and I\'m not sure the psychologists have
welcomed that ever since. But it seems to me there are just as many
problems.

The one thing that I wanted very much, but was not included, was
educational research, because at times I think that can do as much
harm\--at least psychologically\--to young kids as any physically study.

*INTERVIEWER: It was a pretty complicated process getting the
legislation through in 1974. The fetal research question was a very hot
topic late in \'73, and there were various topics that people wanted to
get into the bill. So I would imagine Dr. Horowitz had fairly
complicated negotiations to get everyone on board, to create the
Commission.*

DR. COOKE: Yes, I don\'t honestly know how each of those issues was
introduced. Prisoners research was certainly a hot item also. The
Commission visited Jackson Prison in Michigan, and that was a very
interesting experience for the Commission. We were escorted around by
murderers who had committed a crime of passion of some sort, and they
were delightful people. At times I couldn\'t tell them from the
Commission.

But fetal research was one of the most contentious. And the
other\--children, certainly was, and I still disagree with the
recommendation\--particularly, and I speak about that. And then the
mentally infirm was not contentious, except for the one critical
recommendation, which I still object to.

The problems with children was, in my mind, that they needed more rather
than less protection than adults. That was even more true of the
mentally infirm, and those in institutions were very vulnerable. You
know, I couldn\'t help but think of my own children which, by that time,
had been in Southbury Training School. And the problem was that you\'d
have a quandary here: how do you carry out research on individuals who
can\'t consent, and can\'t understand what the problem is about, can\'t
appreciate the importance. And how do you use them as non-consenting
people when the rest of the recommendations of the Commission were that
you wouldn\'t do that sort of thing with non-consenting adults?

And it\'s a true dilemma that we tried to solve in one way or another
with children. I gave a little bit of ground on my objections by
requiring that parents participate actively in the research. And if
there was anything at that time that seemed out of order, then that
could be interrupted.

But even that I didn\'t feel was satisfactory. Because over the years
I\'d seen research done on children where the parents agreed with
enthusiasm, that was really terribly hazardous to the children. One
study that was done was cardiac catheterization of newborns to find out
the transition from fetal to normal newborn circulation. And cardiac
catheterization is certainly not a minor risk. And then, I think, I\'d
mentioned the revascularization of the brain in children with Downs
Syndrome, where an artery was hitched to a vein coming from the brain
and, in theory, blood was going to flow back to the brain and cure the
mental retardation. But it ended up in profound heart failure in a
hurry.

So that parents frequently can agree to things, either because they
don\'t understand the problem, or because they are so concerned about
their children, the problem, that they\'d like to do almost anything to
correct it. And that\'s been the history of Downs Syndrome\--one
intervention after another that may be harmful to the child; very
enthusiastically endorsed by the parents.

*INTERVIEWER: I think your position is that children and people with
intellectual disabilities can be involved in research where the risks to
them are minimal, but anything above that you think is improper.*

DR. COOKE: Yes. One of the problems is that the so-called minor increase
over minimal can be an awful lot\--wide variation, and each institution
may interpret what \"minor\" is. It can be, I think, very serious
interventions\--dialysis, for example, in one of my experiences. It was
considered a minor increase over minimal. And there are number of such
examples that one could cite that indicate that, to some people, what is
\"minor\" is very minor, and to others it\'s pretty major.

So I felt that we\'ve got to find a better way to justify research
because there\'s no question there are problems with children. And I
mentioned yesterday. the studies that I did a number of years ago,
before Belmont, where we studied the effects of heat stress on babies,
and the justification was that the death rate from summer diarrhea was
very high in the world. And so we showed what happened under the
circumstances. But it was really, looking back, totally unethical. We
used Black babies from an orphanage, and there was no consent. There
were no parents. The whole thing was\--we justified it by finding nice
adoptive homes for these babies instead of being in an orphanage.

But it still wouldn\'t fit modern criteria at all. It was uncomfortable
for the babies, and we had to do punctures, get blood samples and so
forth.

So before the Commission, I don\'t think even legitimate, honest,
researchers appreciated what they were doing, other than \"helping.\"
And I use the hackneyed expression that the end justifies the means. And
that was, I think, the major ethical principle that we were operating
under.

*INTERVIEWER: In 1966, Henry Beecher published an article, \"Ethics and
Clinical Research\" in the [New England Journal of
Medicine]{.underline}. And I wonder if you can recall when that article
came out, and whether that helped to raise consciousness about these
questions.*

DR. COOKE: Well, I couldn\'t cite time. When you get to my age, why, two
months may be two years.

But I remember that there was an awakening of interest at that time.
There was beginning talk of\--a lot of interest in--what was death, and
so there was a good deal of discussion about the criteria for that, and
brain death emerged as a concept. And Beecher had something to do with
that, along with Bill Curran at Harvard.

But I honestly can\'t remember the Beecher paper. That was a long time
ago.

*INTERVIEWER: Coming back to 1974, now, how did you find out that you
had been invited to join the National Commission for the Protection of
Human Subjects?*

DR. COOKE: Well, it sounds kind of egotistical, but I didn\'t think
there was anybody better equipped. I had spent time at Harvard, and
thinking about these kinds of problems. I had a pretty well-known
department of pediatrics at Hopkins. And I had known the major author of
the legislation pretty well. And one of the people making decisions was
Duane Alexander, who was then on the staff of the Commission-to-be. He
was at NICHD\--the child health institute\--and he was one of my former
residents. So I think the thing was all loaded, and I don\'t remember
exactly how I found out. I think somebody sent me a letter asking if
I\'d serve on the Commission.

But I understood pretty well what the Commission was going to be trying
to do, because of my involvement with some of the drafting.

*INTERVIEWER: As you look back on the three Belmont principles, do you
consider that those are the most important three? And if you were trying
to restate the ethical principles that should underlie research with
human beings today, are there others that you would add, or substitute?*

DR. COOKE: Well, I thought that those principles were enormously
important, not just for research, but I\'ve used them in my thinking
about practice and the care of children.

I guess there must be some other principles that would apply, but these
are general enough principles, it seems to me, that they\'ve done a
terrific job of improving the research climate.

One of the areas that I think have been hardest to follow is justice.
And the reason is that it\'s the organization of medical care that makes
justice hard to fulfill. Most research is done in major medical centers,
and major medical centers are frequently located in the center of
cities. And most of the people that live in the center of cities are
poor, and minority. And, as a consequence, many of the patients that may
be subjects in research, come out of that population.

I call that administrative convenience, but it\'s very hard to avoid
that in the way we\'re organized. It\'s rare to have a hospital sitting
out in the most affluent part of the city. And so this even distribution
of risk and benefits is in theory more than it is in practice\--even
though you\'d like to be able to have that equal distribution of risk
and benefits in the population.

And the most egregious studies that led to the development of the
Commission really came from this maldistribution of problems. Looking
back, I think the Congress was probably more upset by the Tuskegee study
than anything else\--and, there, were Black men with syphilis who were
treated\--looking back\--unconscionably. They weren\'t given treatment.
They were to be studied to see what the natural history of syphilis was,
which is disgraceful. And then, another study was the one in which
Mexican-American women were given placebos\--dummy pills\--as a control
for use of contraceptives. And out of the group of, I think, some 40
subjects\--10 became pregnant. And nobody provided care for them or
anything else. Equally disgraceful.

And then Willowbrook, in New York, where hepatitis virus was really
given to produce hepatitis\--had a lot of questionable things that might
have been handled quite differently. And that produced a great deal of
interest in Congress, in terms of care of people with mental
retardation.

*INTERVIEWER: Is there any one of the principles that you think is more
important than the other two?*

DR. COOKE: Well, as a researcher, you\'d like to think that beneficence
would be the most important; because why do you do research unless
you\'re trying to help somebody out?

But from my standpoint the greatest protection comes from respect for
persons. It really means that you value someone as a human being, and
not just as a subject of research.

And looking back\--and again, in my own career, I think that was
probably the one that I least respected. I thought, as I have mentioned,
that these children from an orphanage were great subjects. But I didn\'t
think of them, really, as persons as much as I should. And I think that
was true of an awful lot of researchers at that time. You know\--even
the term \"subject\" of research means that this is not\--in the minds
of the researcher\--a person. And you might just as well have a dog as a
subject of research. And that, I think\--the introduction of that
concept was probably the most important.

I think fairness\--which is really a little bit of what justice might be
called\--I think we were somewhat conscious of that; that maybe in the
negative, in that we weren\'t going to take private patients as much as
ward patients. But at least there was some concern there.

But consent was pretty minor. The only aspect of respect for persons was
whether or not you get sued if you didn\'t have some permission. And
that, at that time, was the usual practice that you had somebody sign a
form to consent to an operation. But that was pure protection, and not
truly a process in which you were considering this as an individual like
yourself.

And I think that in medicine, for a long time, the physician was the
superior person; what the patient thought wasn\'t terribly important.
And they were much more authoritarian. And I think the Belmont tended to
make that\--begin to introduce the notion of the patient as a person,
even though that came out of the Kennedy Institute in Georgetown.

Paul Ramsey, while he was there, came up with this concept, which I
think is the same as respect for persons.

*INTERVIEWER: Some philosophers have worried that the notion of respect
for persons is a kind of a composite; that it deals both with autonomous
individuals who can make decisions for themselves, and it also deals
with those who are not competent. Does that double meaning of the phrase
\"respect for persons\" bother you?*

DR. COOKE: Well, being interested in children, and in people with mental
retardation, autonomy was never a big deal with me. I thought that being
a human being is what you are respecting, regardless of what their
autonomy amounted to. So I\'ve never\--I haven\'t thought of it as
autonomy, really.

The notion of intrinsic or\--of human beings has always, to me, been
much more important than the issue of autonomy, and respect for that is
what I\'ve tried to operate under.

*INTERVIEWER: If you had to single out a moment when you think the
Commission was at its finest, or made its most important contribution,
what one moment would you choose?*

DR. COOKE: Well, I had relatively little to introduce into Belmont, but
I think Belmont was the most important thing the Commission did, because
it established general principles that has guided research from that
time on.

Now, because I dissented from some of the other recommendation, I can\'t
say they were the high point of the Commission. I think they were
cavalier about children, and the institutionalized and mentally infirm.
And that troubled me a great deal, because society in general has been
pretty cavalier about that. Children don\'t have autonomy, and the
retarded don\'t have autonomy. And so\--they don\'t vote and all of the
rest of the things in our society. So they, I think, have been abused
over the years, totally inappropriately.

*INTERVIEWER: I was also going to ask you what do you think you\'re most
important contribution to the Commission\'s work was, or what moment
stands out in terms of your own role? And I guess it would be in
connection with these two reports and your dissents.*

DR. COOKE: Yes. I think obstinacy was the characteristic that made me
the most valuable to the Commission. \[Laughs.\] It was hard to get
something without proving to me that this was correct. I have the bad
characteristic, maybe, of obstinacy, and a number of things obviously
were terrific. And you jump on the bandwagon. But people had to justify,
I think, to get my assent, and they didn\'t do it with children, and
they didn\'t do it with the mentally infirm.

And so my dissent was pretty intense. And what was so disturbing is that
the Commission that followed this one had exactly the same ground rules.
They were now talking about persons with limited capacity for
decision-making. Well, to my mind that was a child, and it was a person
with mental retardation. And to say that you can do research beyond
minimal\--and I\'m not even sure that \"minor\" was thrown in
there\--was, to me, didn\'t show that an awful lot of consideration to
my dissent a number of years before. So I resented that.

*INTERVIEWER: The fact that 25 years after the Commission\'s work ended,
you still hold to the same position suggests that nothing you\'ve read
or experienced in between has changed your mind. And I actually think
that your dissenting view is taken seriously by people discussing
pediatric research, or research with intellectually disabled people
today.*

DR. COOKE: Well, I think we actually have made a little bit of a dent in
this regard, because when the President\'s Commission came out with
basically the same statement, as I just pointed out, it was not noticed
by almost any of the groups that share that concern. And so I took it on
myself to get in touch with them and mounted a pretty good group of
people who dissented from what had been written. And it was clear that
when people think about the problem\--at this conference a number of
people came up to me after the conference and said, \"You\'re absolutely
right about the issue of children.\"

Now, I think the problem is even sharper now than it used to be. Science
has moved to the point where tissue culture can give you a lot of the
biochemical hints that you might learn from a whole patient, without
bothering the patient; and animal research\--which, for a long time
I\'ve tried to promote, very heavily, as a substitute for human
research. And I think there\'s been enough progress there to say that
you don\'t have to put children at risk as much as you had to before to
get answers to problems.

So, I think it\'s made the situation even more intense, that children
should not be put at risk\--significant risk\--nor people with mental
retardation.

*INTERVIEWER: If the Belmont principles were really applied to research
as it\'s done today, how would you think the way research is done would
change? I mean, you mentioned justice, for example. And spreading the
risks or the opportunities across different groups. Where do you
think\--apart from research with children\--where do you think research
today is most out of sync with the Belmont principles?*

DR. COOKE: Well, the children and the retarded, that still, I think, is
a problem.

But I think there\'s much greater consideration of the distribution of
risk and benefits than previously\--despite the problems of where people
are that go to hospitals and go to university clinics and so forth. I
think there\'s been an awful lot of effort done to improve consent, but
I have to say that an awful lot of consent is very perfunctory, and
somebody signs something without reading it, or if they read it you
can\'t understand it. I think my IQ is pretty good, and I read some of
these consent forms, and they\'re absolutely unintelligible. You give
somebody a form that talks about a pharmaceutical agent that\'s being
tried in cancer treatment, and they don\'t have the foggiest notion of
what the dickens this chemical is about, and how toxic it may be,
etcetera, etcetera.

So I think we\'ve got a long ways to go in explaining. And one of things
that I\'ve tried to get people to realize is it\'s much more important
than informed consent, which suggests that you\'re informing people.
What I\'d like to get is \"understanding consent,\" where you really
find out whether these people know\--emotionally as well as
intellectually\--what\'s in store for them.

And it\'s certainly true in medical practice, as well as in research
that we\'ve got a long ways to go in some of those areas.

*INTERVIEWER: Do you think that the IRB system for reviewing research is
working pretty well, in general? Or do you see ways that that could be
improved?*

DR. COOKE: I understand that much of it is pro forma activity. Somebody
looks at the consent forms and it says a lot, and nobody really asks the
question: is the patient, with maybe limited abilities intellectually,
or language, or something\--do they really understand what this stuff is
about that\'s on this consent form?

I think my experience has been that they\'re a little cavalier in
assessing \"minor,\" and the explanations of benefits are probably most
exaggerated.

So I think\--but I don\'t know a better\--I don\'t know a substitute for
a group. How effective it is depends so much on the sensitivity of the
membership. When I was at Wisconsin, there was a man named Norm Fost,
who is a distinguished pediatric ethicist. He ran the IRB. And it
couldn\'t have been better. And then I\'ve been in other places where
there\'s been, I think, really almost a dereliction of duty.

And so the system depends so much on individuals. But I don\'t know what
else you could depend on but individuals.

Certainly, the individual investigator, without any kind of review would
be a disaster. It\'s just so important that people want to accomplish
something, that for a variety of reasons, as I spoke about, they may
have great financial benefit from something working, or they become a
professor in a hurry; and, at times, maybe benefit to humanity isn\'t
the primary consideration. So I think it obviously needs some review.

*INTERVIEWER: Some people have suggested that there ought to be more of
an investment by the Federal government in the staffing of IRB\'s; that
somehow the incentive system ought to be changed at universities so that
it\'s an honor to serve on an IRB, and perhaps you get a reduced
teaching load, or some other compensation within the institution for
this very important service.*

DR. COOKE: Well, I don\'t buy that at all. I think that commercializes
the whole situation. You know, I sit on an IRB because I can get an
extra thousand dollars a year, or I don\'t have to teach. I think
that\'s totally wrong.

What makes a good IRB is enthusiasm for the issues: \"I want to help as
much as possible making this optimally\--from an ethical standpoint.\"
So I wouldn\'t buy the commercialization of\--I understand that there
are some firms that provide IRB review. Now, my guess is they touch all
the bases, but where\'s the emotion?

*INTERVIEWER: Some institutions tend to appoint junior faculty members
to IRBs because the senior faculty members don\'t like to take the time
that\'s involved in reviewing protocols. And what you\'re saying is that
this ought to be viewed by all faculty members as a very important
activity of the institution.*

Well, I happen to believe that senior faculty members probably are
trying to get away with as much as possible, because they think they
have so many responsibilities. And I look back on my own career as a
chairman, I think I put in as much time and effort as the most junior
member of my faculty. And I think you have that responsibility\--or you
shouldn\'t be a senior member of the faculty.

And one of the most important responsibilities is to make sure what your
faculty is doing is ethical and responsible. Why be a chairman
otherwise?

*INTERVIEWER: As you look back on you whole career, would you say that
your work with the National Commission for those four years was your
most satisfying form of public service?*

DR. COOKE: As far as the most satisfying\--well, my recent experiences,
despite the fact that I\'m awfully old, was working with the Social
Security Administration in having benefits for children with
disabilities. And over the last three years we\'ve been able to restore
about \$2 billion worth of benefits. That, I think, has been pretty
exciting for an old man.

But, yes, I think intellectually, no question in my mind that the
Commission\--and I think a high point in that was the Belmont\--was the
high point of my career.

It hit all the things you like to have in experiences in life. It was
intellectually exciting. It was socially great. And you felt as though
you were doing something that was important for the world. And that\'s
about the maximum you can get out of an experience.

*INTERVIEWER: Are there any topics that we didn\'t touch on that you\'d
like to talk about?*

DR. COOKE: No, I think I exhausted the audience.

*INTERVIEWER: I think you took your responsibilities very seriously, and
prepared two very eloquent statements about the issues.*

DR. COOKE: Well, you know, I have a big emotional commitment, for
obvious reasons.

I think that makes a big difference.

*INTERVIEWER: Yes. So for you, this was more than just an academic
enterprise. You cared a great deal.*

DR. COOKE: Very much. Yes. And the same way in my career. I mean,
children have been terribly important in my life. And so anything that
might improve the situation for children came very naturally.

*INTERVIEWER: Do you see a change in the climate in the country, or the
culture, since the Americans with Disabilities Act\--I mean, do you
think that that signals a change in the way we view people?*

DR. COOKE: I wish it did more. I still think there\'s a lot of public
apathy about people particularly with disability. And there have been
some major efforts to try to instill more interest. And one I\'ve been
involved with, the Special Olympics, I think has done a good job along
those lines. But there\'s still tremendous apathy for people with
shortcomings.

And I wonder about the worth of children; whether they\'re really
thought of as a great deal more important than they used to be? They
certainly were, from a legal standpoint, they were pretty second-rate
citizens, back a number of years. But these stories about children
who\'ve been neglected, or children who\'ve been actually killed and so
forth, maybe we know about more about them now from the news than we
used to, but it\'s still very disturbing. And the condition of children
in other parts of the world is really terribly depressing, it seems to
me.

I think the whole issue of inherent worth of people is terribly
important, because it covers children, it covers these cases\--the one
in Florida interests me a lot; this woman whose husband wants to let her
die. For me, that\'s very disturbing because although she has nothing to
contribute, and I\'m sure, after all these year\'s she\'s not going to
\"recover,\" nevertheless, I feel she still has inherent worth, and
terminating her life\--one of my children\'s still on tube-feeding for
the last 20 years. And so I can\'t agree with the courts at all in their
decisions.

*INTERVIEWER: Would you say that your religious beliefs and your
training as a child in a particular religious tradition has colored the
way you come at questions of ethics, and questions of research?*

DR. COOKE: I wish I could say that. I don\'t think religion has played
any part in my life. I\'m clearly an agnostic. And I regret that a
little bit. But I can\'t change my way of thinking at all.

*INTERVIEWER: So you worked out of a humanistic ethic.*

DR. COOKE: Yeah\--very much. I think my feeling is that our society
would totally fall apart if we didn\'t have these kinds of concepts.
They\'re almost utilitarian in a way\--if you didn\'t have a respect for
others, you\'d have a terrible society. In fact, it\'s one of our big
problems right now. We\'ve got groups that have no respect for each
other. And, unfortunately, they\'re religious groups.

So, I think, looking back, I don\'t know where this came from, other
than my own personal experiences with my own children.

*INTERVIEWER: I\'m interested that you mentioned your satisfaction at
having benefits restored to people with disabilities under the Social
Security program. With our conference and the emphasis on the Belmont
Report, it\'s easy to lose sight of the whole health care system. And
I\'m wondering whether you think that something like a National
Commission, looking at the health care system, and working really hard
to get a better distribution of health care to those who need it might
be a good step at the present time.*

DR. COOKE: I will not get into what I think about health care. It\'s so
radical that to put it into this would be\.... Well, I think it\'s a
relatively simple problem of what ought to be done. Everyone talks about
lowering the cost of health care, and no one says how.

What they talk about\--politicians talk about\--I must say, Senator
Kennedy, as well as these others\--talk about lowering the cost of
health care, which is really moving the payer from the person\--the
citizen\--to the government.

So, I have a radical way of looking at it, because the largest single
piece of overhead is insurance. The insurance\--the cost of carrying out
insurance programs, when you consider what the physician has to do in
his office to satisfy the insurers, what hospitals have to do, what the
agencies that are the insurers have to do, *et cetera*, it comes to
somewhere around 20 to 25 percent of the total cost of health care. That
comes to \$300 billion a year.

So, what I have proposed\--and nobody will accept a little book I\'ve
written--is to call the regional health care public utility. And it gets
rid of Medicare, it gets rid of Medicaid, it gets rid of all insurance.
And what you do is everyone pays the same amount, just as they do for
their water bill or their gas bill or something else, to a utility. And
it literally will save some \$300 billion a year.

But it\'s pretty radical. Physicians all work for the utility. Hospitals
are all run by the utility. You get rid of all the duplication, *et
cetera, et cetera*.

And I know that we can provide good care to everybody, regardless of
income, with the savings out of getting rid of that insurance. My whole
point is you don\'t insure for your rent, you don\'t insure for your
food, you don\'t insure for anything except catastrophic stuff. But now
regular medical costs are so high they\'re catastrophic, even\--you
know, having a tooth out.

So, I think we have to totally reorganize the concept. And my believe is
you pay the same amount each month. Billing becomes very simple. You pay
the same amount for your whole life, because the risk and benefits are
distributed across the life span.

But, of course, getting rid of the lobbies\--you know, I know this
won\'t happen, because the insurance lobby is so strong, and union
lobbies are strong, *et cetera*. But it\'s the only way truly to save
money.

It sounds somewhat similar to\... on the Belmont principle of justice to
our current situation would be to apply that notion to the distribution
of health care, or access to health care, and maybe that\'s the next
step.

DR. COOKE: Yes, everyone would have the same\--basically the same
opportunities. If you were poor, you could have vouchers to replace\--it
would be essentially part of welfare, so that could pay your monthly
charge for your health services.

But with the large\--I\'m not big on the single payer system. I just
don\'t feel that the Federal government does things in a very efficient
manner. And then they most of them contract with insurers to carry out
the unnecessary paperwork. And so it\'s interesting. I think the
for-profit motive is still a good one, so the public utility would be an
investor-owned, for-profit system\--but regulated. And the big problem
now is that this is totally unregulated. HMOs can run the damn costs up,
and you can\'t do anything about it. And they can cut out services, and
you can\'t do anything about it and so forth. And the public utility
concept is one that appeals to me.

And I have this little caveat, that the public utility would be
dividends, and so it would be tax exempt, as would be capital gains
after 10 years. So you get rich people financing the health care system.

So, the whole thing, I think, would be a great solution, but it will
never occur. Too many interests that will block it.

But I don\'t know how else you can get the cost of care down, but
getting rid of the overhead.

*INTERVIEWER: Well, thank you for all you\'ve done for the Commission,
and for the field of biomedical ethics over the years.*

DR. COOKE: Well, thank you very much. It\'s been fun.

-- END OF INTERVIEW --