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Stakeholders' Workshop

MR. SEA: Thank you. I'd like to welcome you to the well-fed, bearded, balding health professionals portion of the panel.

(Laughter.)

MR. EGILMAN: And we invite you to hotdogs for lunch.

MS. CAMPOS-INFANTINO: Could you please identify yourself by name?

MR. EGILMAN: This is now an official HEW recommendation for lunch.

MR. SEA: I'm Geoffrey Sea. I'm a health physicist and also a survivor, which I hope I'll get to. I'm also living out a perverse fantasy today, or nearly. I've always had this weird dream that I would be at a DOE meeting speaking on a panel where I'm the one wearing the dark navy blue suit, and that may be an indication that we're entering the bizarre world that I hope we're entering into, in which the victims actually get to stand in judgment of the perpetrators, but I'm not sure. We'll see about that.

I started out in this business working for the Oil, Chemical and Atomic Workers Union, which Richard Miller now works for, with a guy named Tony Misake, who's a health and safety advocate. And Tony taught me and many others that nearly every industrial toxin and carcinogen that's ever been identified by science, quote/unquote, was actually first discovered by workers in that industry. From coal tar in the 18th Century to vinyl chloride in the 20th Century.

And the way workers generally do this is through a method that he calls the body in the morgue method. It's not very sophisticated, but it's by counting the number of people -- associates, co-workers, who have actually died.

Coal tar was first identified in this way among chimney sweeps in England who would take their clothes off and shimmy down the chimneys to clean out the coal tar. That was the first identified case of an environmental or industrially caused cancer. They got scrotal cancer from doing that.

It turned out -- they didn't know it at the time, even though they did identify it was linked to the industry -- it turned out that it was actually from the uranium and thorium in the coal tar, in the coal dust that was given them the scrotal cancer. So it was the first recognized radiation. One could say it was the first recognized environmental cause of cancer.

To broaden out Tony's message, it's that the actual victims of exposure who were always the first to identify a problem and to identify an epidemic of disease. And it's only later that the health professionals come around to recognize the problem and finally, hopefully, government officials and policymakers. And this was the case with the radiation experiments.

It was first we, the subject and survivor community, who found out about the experiments, publicized them, researched them. I think a woman who we all owe a great debt of gratitude to and need to memorialize in some important way is Dorothy Ligoretta, who was the founder of the National Association of Radiation Survivors, a worker during the Manhattan Project in Joseph Hamilton's laboratory at UC-Berkeley.

In going through Hamilton's papers, she, in the early '80s, 1980 and '81, found the documents concerning the plutonium injections, located some of the families, 13 years before Eileen Wellsome did the same thing. Held press conferences. Then found out about the other experiments. Held press conferences in 1982 that were not covered by anyone except the student newspaper at Berkeley which covered them. That's why we known they happened. Which talked about -- and there was an editorial in the UC-Berkeley paper called Buchenwald at Berkeley in the early '80s. That didn't get a Pulitzer Prize. I think it deserved one.

But it was Dorothy who was killed in a car crash under suspicious circumstances in 1988 in preparing to publish a book about these experiments who deserves the real credit here. More than Hazel O'Leary or anyone else.

And it's the other survivors who followed her and who persisted in bringing this to public attention -- and I am honored to have worked with Dorothy and with the others early on. We -- some of us are here in this room. Cliff Honicker is sitting back there -- are the ones who initiated what later became the Markey Report.

We went to Congress and told them that they needed to investigate this and we persisted for years until they finally published their report in 1986 which outlined these experiments and which was totally and roundly ignored.

It was ignored for many reasons. I wrote an article. Some of you haven't seen it. I have some extra copies in the Columbia Journalism Review about why the media ignored this issue for so many years.

The situation changed in November 1993. Now, I don't think we talk about or realize the real reason why it changed.

It is not coincidental that the week that Hazel O'Leary made her announcement admitting these experiments followed by days the announcement that Russia and the United States would no longer target their nuclear missiles at each other. That was the signal event that showed that the Cold War was over. If any one event did. And it was only after that decision which reflected a basic change in U.S. strategic nuclear policy, that this government could admit the atrocities that it had committed. But that was a fleeting admission.

In her press conference in November of '93, O'Leary compared the experiments to the experiments she had heard and read about from the Nazi concentration camps. But within eight weeks of that press conference, Secretary O'Leary went to testify before the Senate Government Affairs Committee, the same committee that she's going to testify before in two weeks. And in that hearing in January of 1994, Secretary O'Leary was asked whether the experiments, the radiation experiments, were unethical. And her response was, "I'm not sure. I can't say if they were unethical. I'm not an expert in that area. I have to refer to our agency's attorney."

Now, eight weeks before she had said that they reminded her of the experiments at Auschwitz and Buchenwald. Now, I think that I'd like to suggest to the representatives from Senators Stevens' and Glenn's office that when the Secretary is called before the committee in two weeks, she be asked whether she can say or need to refer to her agency's lawyers if the experiments at Auschwitz and Buchenwald were unethical. Maybe we don't know that.

Something changed. We know that Hazel O'Leary was called to the carpet. We know that there was a political process that's been in play ever since, ever since those rank admissions in November of '93 that has suppressed knowledge about these experiments.

I'm going to skip through a lot of the stuff I wanted to say because I see that my time is running short and just maybe I'll come back to some things later.

But we see that this suppression is still going on and it is reflected in the Advisory Committee's report, certainly. We said when we found out who had been selected for the Advisory Committee, we knew what was going to be in the final report. We saw that there were a bunch of reasonably good ethicists and historians and extremely bad scientists. And we said that the report in its final version -- we said this at the very beginning of the process -- is going to say that wrongs were committed, that there were ethical problems, but that thank god no one was actually harmed.

That's what it was set up to say. That's how the people were chosen and that's what the report said. We challenged the composition of the Committee from the beginning, not only on ethical grounds that the Committee needed to include a balance of health professionals and also needed to include radiation survivors, but on legal grounds. There's the Federal Advisory Committee Act which others will speak about later, which requires that federal advisory committees include representatives of the most affected communities.

We were ignored and -- well, I won't use stronger language.

We asked the White House and the Department of Energy for meetings just to discuss the issue of the composition of the Advisory Committee and our letters were not responded to.

Now, a sign of how out of touch the government is with the needs and demands of subjects and survivors is the title of this panel, Medical Monitoring. Subjects and survivors don't want medical monitoring. Medical monitoring implies a continuation of the original experiments. It's something else that the government is doing to us. We don't want the government doing more to us. We want to be controlling our own destinies, our own lives. We don't want medical monitoring.

We want medical follow-up, which is distinct from monitoring in that it is controlled by the subjects and survivors themselves. And we want medical care. And these are not requests. These, like the FACA law, are requirements of international law. The Nuremberg Code requires -- Section 7. Read it. -- requires that governments provide -- not the governments but anyone that does unethical experiments provide for follow-up and for protection of the subjects of all human research.

And the International Covenant on Civil and Political Rights which again, because I'm running short on time, I won't read the relevant sections. But it does provide that all victims of human experiments and anyone whose rights or freedoms have been violated shall have effective remedies provided by their governments. And if those are not provided, then those governments are in contravention of international law.

We told the Advisory Committee this. The Advisory Committee ignored us, like they ignored almost everything else we said.

MR. SELIGMAN: Geoff, your time is up, so wrap up; okay?

MR. SEA: I will wrap it up.

In conclusion, we can only say that in responding to the recommendations of the Advisory Committee and of the Interagency Group as we've seen so far, that we consider them to be illegitimate and illegal, and therefore, invalid. And therefore, the only solution is to dispense with them. They need to be discarded.

Lest that seem destructive or counterproductive, we don't want to be that. We want to be constructive. The Taskforce, seven months ago provided the Advisory Committee with a nine point plan of remedies. These are, again, not requests. They are what we consider to be the requirements of international law.

Of the nine points on the plan, none of them are in the Advisory Committee's report. None of them are in the recommendations of the Interagency Working Group.

In summation, we will not be mollified by being called stakeholders and being addressed by our first names. The only criterion by which we will measure the intent and integrity of this process is that the nine points in our plan become the recommendations of the Interagency Working Group and that those recommendations are adopted and finally implemented.

And with that, I'd like to present Dr. O'Toole with three buttons that say: "The buck stops at DOE." And one is for you and one is for Secretary O'Leary and one is for President Clinton.

(Applause.)

MR. SELIGMAN: Tara, do you have a formal response to the presentation?

DR. O'TOOLE: Not right now.

MR. SELIGMAN: Thank you. Okay.

Dr. Egilman?

MR. EGILMAN: She was shorted one button, she did say.

Thank you.

First, let me not get out-credentialed, if that's going to be an issue here. I'm board certified in internal medicine. I have a masters in public health and I'm board certified in occupational and environmental medicine and I have completed a residency in preventive medicine.

But I can read for myself, so I will not read to you. And I would suggest that Dr. Galson, in addition to reading the report, actually think about it and analyze it because much of what he said is contradicted in the report in its sections. And I'll try to explain some of those. But since I'm going to not have time, I refer him to this red document.

I also out there have a full criticism in writing of the ACHRE report. It is in urine color. It's the yellow documents. Okay.

(Laughter.)

It's a coincidence. There was a sale on that color.

A lot of you have heard that I'm an agitator, and I would just like to let you know in the words of a great American philosopher what an agitator is. It is the part of the washing machine that gets the clothes clean. Okay?

(Applause.)

And that's what we're trying to do here. And clothes are dirty.

First, just in case there's any confusion, the Taskforce doesn't have a current position on yesterday's response, but we have the old position, these nine points. This is the position of the Taskforce. So let there be no confusion. There is a position. It is a floor position. This is not everything we want. This is the base for what we want.

And now, a poem dedicated to Dr. O'Toole.

In Germany the Nazis came for the Communists and I didn't speak up because I was not a Communist. Then they came for the Jews and I didn't speak up because I was not a Jew. Then they came for the trade unionists and I didn't speak up because I was not a trade unionist. Then they came for the Catholics and I was a Protestant, so I didn't speak up. Then they came for me. By that time, there was no one to speak up for anyone.

First, the scientists came and irradiated the Japanese, and I didn't speak up because I was white and an American. Then the doctors came and irradiated the pregnant women and their fetuses and I didn't speak up because I was a man. Then the doctors came and irradiated the soldiers and I didn't speak up because like President Clinton, I was a civilian. Then the doctors came and irradiated the children and I didn't speak up because I was an adult. Then the government and the corporations came and irradiated the workers, mostly Native Americans, and I didn't speak up because I was a doctor. Then the government came to irradiate me, but by that time, there was only the government officials to protect me and they didn't speak up. It would be impolite.

Yes, harm can come from notification. I agree, Dr. Galson. That's what they said. They said psychological harm. But what is the real harm they're worried about. The real harm was that if you notify people, you actually tell them what happened to them and they might be upset. They might file lawsuits. They might actually do something about it.

There's another harm that comes from notification and medical monitoring. If you do that, you may actually find some people are sick and that that illness may be due to the radiation that you perpetrated on them and they may be upset and that would be a harm.

So notification and medical follow-up, yes, can cause harm. But the harms that ACHRE were concerned about are not the psychological harm of telling someone that they were a guinea pig in the past -- oh, can you stand it. Not that we irradiated you but really telling you we irradiated you, that fear. We have nothing to fear but fear itself.

Now, what are the problems with the part that Dr. Galson read. He kind of made this comment -- oh, yes, this one in 1,000. He hasn't seen it anywhere else the way they determined to turn it into just the rest of your life. Well, you know why? It doesn't appear anywhere else. Nowhere in the medical literature. Nowhere in his professional training. Nowhere in mine. Nowhere in Seligman's. Nowhere in Schulte's has anyone ever seen the risk assessment played as the remaining lives.

It was done that way intentionally to reduce the number so that they could come up with their preconceived conclusion.

But that wasn't enough, as Dr. Galson didn't read to you. What he didn't read to you was they actually found people that qualified by their criteria and they came up with other excuses even when they met their criteria for not doing it.

Yes. New things may be determined in the future that may change our opinion. Well, our opinions in the past, as Dr. Gladstein said, quote, why he didn't vote for medical monitoring that he thought was indicated --

AUDIENCE PARTICIPANT: You're stealing my quote.

MR. EGILMAN:Oh, I will not steal that quote.

AUDIENCE PARTICIPANT: It's during his seven minutes.

MR. EGILMAN: I will not steal that quote. Pardon me. That's a Stu Farber find. Never mind. I'll give you the general point and he'll fill in the details.

It was political criteria that they used, not medical. Political. And so if something's going to change in the future it's got to be a political change. That political change has to come from the stakeholders victims groups and it's political pressure. It's -- and hypocrisy. That will change the recommendations, not new medical information. It wasn't based on medical information. It was based on a political situation.

What do other agencies do? I'm just going to say a little bit because Dr. Schulte can explain what NIOSH does in detail. But the short form is anybody who's studied by NIOSH -- and when you get studied by NIOSH, you're a volunteer and you weren't exposed intentionally by the government. Get results, no matter what results.

NRS just came up with a recommendation for the Native Americans from Alaska. They are going to get their results even though they don't think they were harmed.

I'll go quickly. One minute. Give me a minute.

MR. SELIGMAN: Got it.

MR. EGILMAN: Thanks. I'll give you a button. Oh, I gave you a button.

MR. SELIGMAN: I got a button.

MR. EGILMAN: Well, you're wearing the button.

MR. SELIGMAN: I'm wearing the button.

MR. EGILMAN: Yeah, way to go, Paul. He knew I'd embarrass him if he didn't wear the button. We've known each other for 12 years.

There's an extra ethical duty above the one that NIOSH has in these cases. For the Native Americans, an extra, extra one. Native Americans were encouraged to do the mining by the BIA and the DOI.

The government had a specific mandate from the Indian Health Service under the Snyder Act of 1941 to assure the health of Indians. It was an absolute congressionally mandated duty to ensure their health. The government guaranteed the health of the Indians for stealing their property.

And you know, if Buchanan wins, the Navajos are willing to give you applications for citizenship because as you know, as you know, if you get a stolen TV set from someone and you buy it, it ain't yours. And we stole it from them. So if somebody's going to get thrown out of here, you'd better make up nice to the Native American friends of yours.

(Applause.)

But in addition, there's an ethical duty for everybody else. These were intentional acts. They were done by the government. It was a known risk. There was a cover up and there is a continuing cover up that's organized because this document says don't tell people. That's a continuation of the cover up.

Oh, I'm sorry. You said I could yell in here. I asked permission.

Oh, you didn't tell me just when the door was closed. You don't have a uniform on. He said it. I would have done it.

MR. SELIGMAN: Twenty seconds, Dave.

MR. EGILMAN: Okay.

MR. SELIGMAN: Okay. Thanks you.

MR. EGILMAN: What should be done? Notification of all victims, medical monitoring for all victims, medical care. Now, that's an obligation as a remedy. Traditional monitoring may miss some health effects. Remember, there are psychological harms that occurred as a result of these experiments.

Let me refer you to Elmer Allen's daughter's testimony, which is poignant on the issue of how his life was ruined. They said no one was harmed because of the plutonium experiments. They cut off his leg. He became an alcoholic. His life was destroyed. And you're telling him and others that they had not effect. Give me a break.

MR. SELIGMAN: Thank you.

MR. EGILMAN: One more. Just one last point.

MR. SELIGMAN: Last point.

MR. EGILMAN: They said don't tell him because they may have psychological problems if you tell them. Well, NIOSH considered that and they said that's true. So guess what? You provide psychological support. You don't just throw up your hands, "Oh, there's a problem. We can't do it." No. You can provide counseling if you think that's the reason you can't help people.

(Applause.)



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