medical experiment, he would be given remission from his sins, let's put it that way, in the event he survived.

This, as far as I know, was the only voluntary human method of experimentation that I know, except on a minority, maybe antibiotics or something like this where they wanted to experiment with a new

one.

Is that still going on?

Dr. DUVAL. So far as I know, it is not, Senator, but I must say I do not have the answer to the question.

Dr. MARSTON. The guidelines in any experiment that involve human subjects are the same as far as we are concerned with, I think, a special emphasis on any circumstances in which those that are unable to make decisions of their own-for example prisoners, particularly the younger ones. There is a special sense of protection of the rights of the individual under those circumstances.

Senator DOMINICK. Well, if the man is on death row, he doesn't have much choice anywhere.

Dr. MARSTON. And the statement has been made that he can't make a rational choice if he is in those circumstances.

Senator DOMINICK. Take a normal human being, and he has been advised by as many people as he can reach that his case is hopeless in one form or another. What does he have to do now in order to get the right to have someone experiment on him, or her?

Dr. DUVAL. I don't believe, stated that way, it is likely to happen. I don't think one could come forward and identify a particular experiment in which he might be a subject. With professional help, I suppose he might be able to determine what work is being done where, and he might go to that particular point. It would be a very unstructured arrangement.

Senator DOMINICK. This is one of the things that was concerning me, frankly, in terms of being able to make use of what may be new advances in one area that hasn't been heard up in another area.

The question is, where do you get that type of information and how do you make yourself available as a voluntary experimenter in it as the guinea pig, so to say?

Dr. DUVAL. The movement of the information of the type to which you refer having to do with useful progress now occurs so rapidly, that it is difficult to believe that someone could be left out of a treatment that might be available.

Senator DOMINICK. Well, with all due respect, Doctor, I am not quite sure that is true. If you have got a lot of money and have the ability to go around to the various places, treatment centers and clinics, you might by chance happen on someone who has particular skill in a particular operation, or something of this kind.

Just for an example, I suppose our hospital at the University of Colorado Medical Center has done more liver transplants than most. hospitals have. I doubt very much if that is known around the country.

Similarly, if you didn't have any money, there is no way of your getting information.

Now, is there any kind of an informational source through the NIH or any other group?

Dr. DUVAL. Senator, I will ask Dr. Marston to respond, but I would submit that the reputation of the University of Colorado Medical Center and specifically the work done there in liver transplantation is known by virtually every physician in the United States.

Senator DOMINICK. It is possibly true on that one, but I would say to you that any one living in Chicago or New York on a typical income wouldn't have the foggiest idea of where Colorado was, let alone what they were doing there.

Is there a source of information on this at NIH, or anybody else? Dr. MARSTON. Senator Dominick, I think in a sense there are two questions here. One is the exchange of information as far as research protocols are concerned, and here, there are regular advertisements throughout the country of types of research that are being carried on at the Clinical Center at NIH.

There are similar types of information exchange from a place such as the work of Dr. Stanzal at Colorado, the types of work he is doing and the types of patients who fit into his research.

Now, these are investigative techniques, though, in which one is seeking individuals who uniquely might give informaton of benefit to many people by participating in some type of exercise.

When a technique has gone beyond the experimental stage, I would agree completely with Dr. Duval that one does know throughout the medical community at least where the dozen, 50, 100 experts in areas such as renal transplantation are, and this is not, once these have become established techniques, then an information exchange problem.

There are reasons that one might not want, in the experimental cases, to have wide publicity and false hopes raised when one is trying to work out the actual procedures.

Senator DOMINICK. Well, it was only 10 years ago that a friend of mine in New York, a very close friend, had an aneurism problem, which was known about. The doctor there said to his relatives, "Don't worry about having him operated on, because there is no chance of his recovery."

Yet, at that very time, they were doing those operations in Texas and doing them well.

Where do you find information like that? How would you find it? This person wasn't poor. They could have gone there very easily and he could have been operated on, but there was no information available.

Now, how do you find the informational source? This, I think, is important.

Dr. DUVAL. Senator, the only reasonable answer to that under the circumstances of the timing of that kind of work, is that as soon as it was known, for example, in Texas, that aneurisms of the type that perhaps your friend had were in fact operable with a reasonable chance of success, the medical profession would know about it. Texas would have to have had enough experience to know that this would work.

I do not know how far they were toward building their cases at the time of your friend's case, but there will always be lag time, and there should be.

Senator DOMINICK. I have difficulty following this. If a person is said to be in terminal condition by his local physician or local clinic

or whatever it is, but there are people in other areas of the country which are doing experimental work, why shouldn't he have the right to volunteer to go there, regardless of whether the experimental work is valid or whether it isn't?

Dr. DUVAL. I think, again, the only way that I would be able to answer that at this time is that this might result in the development of a pattern that in the aggregate would be very disadvantageous to the normal moral development of the society.

If one had them mass migration around the United States of persons considered terminal who were looking for some last resort, I can see that the total amount of heartbreak, the total stimulus to even move into the area could be very undesirable. I would like only to urge that a consideration of a solution of that kind be approached very cautiously. Senator MONDALE. Would you yield there? Senator DOMINICK. I would be glad to.

Senator MONDALE. I think Senator Dominick's question is well taken. What it means is that if we do not have an informational source, the very wealthy are able, through their sources and contacts in the medical field and their capability to pay appropriate fees, to sort out all the possibilities from a medical standpoint and because of that advantage may migrate where their health chances are the best.

But the average American, who does not have those resources, is left with options which considerably reduce his life chances under those circumstances. It seems to me that that raises a legitimate ethical issue, whether the prospects for life and health should depend solely on money and contacts and influence.

Senator DOMINICK. It isn't even necessarily that, Senator. It is just the question of whether the medical profession or medical clinics or your informational sources, wherever they are, are sufficiently up to date so that you can find out.

In other words, is there any kind of an information bank that is what I am really trying to find out.

Dr. MARSTON. Again, there are two questions here. One is as far as the experimental programs are concerned. We circularize on a regular basis the kinds of research that we do at the National Institutes of Health, and that is also done from other research centers.

Suitable patients for such research projects are referred to the research centers by local physicians, after which referral, there is another screening of patients at the research center itself. Thus, one could say that two professional staffs select patients for experimentation.

There is another side to this, though, and that is when somebody is about to become a treatment subject, and Senator Mondale, you remember very well the problems in Minnesota with the early enthusiasm for cortisone as a cure-all of arthritis, and how much harm could have been done if there hadn't been some restraints on what looked like a miracle drug.

So, this is another aspect of the ethical side. What type of evidence do you accumulate before you raise the expectations of the people, when you may do harm by treating prematurely?

I think this is a point Dr. Duval and I have been trying to make. There is a third point, and that is, how can we assure equal access without regard to economics and all of the rest?

I think that is one of the major problems of this country and one of the ones that I think we have to work very hard on, and it is a very real question that all of us need to put all our support behind.

But I would say again as far as the identification of research opportunities, the protocols for a large study such as the one that we just completed, a 10-year study on the use of oral antidiabetics, this was well known, well advertised by multiple clinics throughout the country, and patients had a chance to participate or not paricipate.

We had an ethical problem in that study, because it turned out that the treatment we thought was going to help was actually harming the patients, and this has led to a lot of discussion in and the medical

area.

But the fact that there was a study was widely circulated, that it involved multiple institutions across the country. That is what raised a serious question about how individuals who were not very sickdiabetics who didn't require insulin-might benefit from a new type of therapy.

It took us 10 years to unravel that one, and we did have people from all over the country who were involved in that, Senator Dominick.

Senator DOMINICK. Well, I don't mean to be particularly difficult on this-maybe I am being that way-but there seems to be such an emphasis on security these days. I don't know whether it is that people get sued if they do something wrong, doctors, hospitals, and clinics. This is a certain part of the problem, I know. It seems to me if a person is willing to volunteer for treatment, there isn't any reason in the world why they shouldn't have the right to go there. It is their money and life and health. Why shouldn't they have the right?

Dr. DUVAL. No argument, Senator.

Senator DOMINICK. Yet, if you try and get any kind of an informational source from a hospital or from-well, I frankly have never tried the NIH, Dr. Marston, and I am sure that maybe things would be better there-but if you try to do it anywhere, they will tell you, "That is nothing but a bunch of quackery, and forget it," because it hasn't been proved in scientific journals.

Who cares? It may be nothing but psychosomatic, but it might help. Dr. DUVAL. I am sure, Senator, we know there is no single answer to the profound observation you have just made. I would submit that, on balance, it is better to be conservative in the management of something that deals with human life.

It would be a difficult thing to answer in an area as profound as you have just raised.

Senator DOMINICK. Well, I recognize the need for some kind of discipline within all these professions, regardless of what they are in order to get some sound scientific results, but at the moment, people who tend to experiment on different theories are either not granted licenses or whatever grants they have had may have been cut off. I have two or three things of this kind that I know. Or they are forced to go to another country.

I know some in the cancer field, and I am sure both of you know what I am talking about, where they moved to another country because they weren't permitted to practice here, and yet, nobody really knows whether that is going to work or whether it isn't.

I have some real difficulty in determining why we go to this length. Dr. MARSTON. Senator Dominick, we may have a difference of opinion. I thought for a moment that we didn't, but we may have one.

It seems to me that one does have a responsibility in 1971 to try to utilize the best judgment and the best minds in the treatment of the patient, whether they have a minor illness or whether they have a serious illness, and the major danger that has plagued people interested in cancer and the claims for cures is the frequency with which those claims, often based on quackery, have prevented access to really effective therapy. I think this is the danger when one says, "Why not go and use something because you haven't proved that it is good?"

The big danger is that you might be withholding from that patient really effective therapy.

Senator DOMINICK. I can understand that, but I don't see why you can't in light of present scientific knowledge or medical knowledge or whatever it is, put up an information bank and say, "This thing has been shown to operate. It has an a percent of chance of curing, if you go down and take sarsaparilla five times a day, we don't think it has much benefit as far as you are concerned, but here are the people who are given five doses of sarsaparilla a day."

Then, if a person wants to go and drink five doses of sarsaparilla a day, why shouldn't he? This is what I don't understand. Yet, they are not permitted to do that. I think that is pretty rugged.

In any event, getting back to the main case, and I got off on a little tangent of my own, for which I apologize to my colleagues, I will ask just one more question, again, with respect to page 9 of our statement, Dr. Duval.

Specifically, you say that several distinguished groups already in existence have broad responsibilities in the areas outlined for the proposed Commission on Health Science and Society, and then you go through that list.

Now, what are they doing, really? You say they have broad areas of responsibility.

What do you mean by that?

Dr. MARSTON. Each of the institutions and agencies mentioned in that portion of the testimony perhaps sees its own contribution to this question differently than any other, except that in the aggregate each is concerned that they deliver competent, quality advice to the efforts of its member scientists in the area of ethics and morals as it relates to biomedical research.

One of the nicest examples of this, perhaps, is the creation recently of the Institute of Medicine as a division of the National Academy of Science.

While it does exist in fact for several reasons, clearly one of its primary reasons is to oversee the advances being made in the United States in biomedical research, the manner in which the new information is deployed, and the ethics and morals that attach to the decisionmaking process within that arena.

I would simply submit that in response to the stimulation provided from many sources, including this committee, and consideration of this issue since 1968 that this is precisely the response in the scientific community that I assume that you would want to see develop.