DOE Openness: Human Radiation Experiments: Roadmap to the Project Project Events |
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Stakeholders' Workshop
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AUDIENCE PARTICIPANT: I'd like to submit this. It's kind of for the record. Do you have some process to give them to somebody specifically? MS. CAMPOS-INFANTINO: Give them to Colonel Bailey. AUDIENCE PARTICIPANT: So -- I didn't bring enough. I'll have to make copies. MS. CAMPOS-INFANTINO: Sure. Okay. I'm sure people would appreciate that, so thank you. Any other questions from anyone? The person up front asked if the speakers could submit handouts for the record if they didn't bring copies for everyone, and we suggested that yes, the speakers could give any handouts that they haven't copied for everyone to Colonel Bailey and he'll make sure that they're included in the record. Thank you all so much and have a good conference. COL. BAILEY: I'd like to introduce someone who's been very active in setting up this workshop. I was remiss in not remembering to introduce him. Has E. Cooper Brown come in yet? Come on up, Coop. E. Cooper Brown is the head of the Taskforce on Radiation Human Rights and he has a lot of people who come from all over the country. Cooper, would you like to say a few words? MR. BROWN: Thank you, Colonel Bailey. I guess I'll tell my Colonel Bailey joke first. It's sort of by way of an apology. I told the taskforce members last night to dress casually, and this morning when I got up, I realized Colonel Bailey would be wearing his uniform so I figured I'd wear my uniform, too, at least for today. On behalf of the taskforce, I would like to thank Hazel O'Leary, the Department of Energy and Dr. O'Toole for their initiative in making this workshop happen. I would also like to thank on behalf of the taskforce, the various agencies that make up the Interagency Working Group on Human Radiation Experiments in participating. I think it's no secret in this room that getting here has had its trials and tribulations, but I think we've overcome them when we got here. We really appreciate the work that DOE has put in, particularly this last week. Elly Melamed, I could tell just by the sound in her voice over the last week and her staff, that they were putting in just as much work and pulling out just as much hair as we were in putting this thing together. Colonel Bailey spoke in his introductions of making history and that certainly is the case for the member organizations that make up the Taskforce on Radiation and Human Rights. This is the first time -- and this was the point that we made to Dr. O'Toole in past meetings and to the Secretary. This is the first time that we can recall in our institutional history, as it were -- our institutional memory probably at this point goes back almost 20 years on the radiation issue -- that an Administration has included those who have been victimized by government's activities in the process of determining what is a proper response to the issue prior to submitting a final plan to the President or to the Congress. Past Administrations, we've been left to basically fight these issues out in open public forum and not always, as I'm sure you'll hear over the next two days, to our satisfaction. This meeting, I think, is also making history in another sense, and that is that we in the Taskforce are always mindful that there are others who have also found themselves victimized by or abused by government for one reason or another, and we feel that this type of a process can become a model for how government deals with all people who find themselves abused at the hands of government. And I'm thinking particularly of the Gulf War Veterans who come right behind us right now with their own advisory committee. In any event, Dr. O'Toole, in her letter of invitation, mentioned that there would be -- expressed the hope that perhaps there would be areas that we would be able to identify where there would be a need for continued dialogue towards resolution, and I think that you will find in the next two days in the presentations made that there will be those areas identified. And hopefully, by the end of tomorrow, we'll be able to identify a process mutually acceptable to all parties by which we can bring all of those issues to a final resolution. And in conclusion, the Taskforce caveat to what is going to be presented by the panel members over the next two days. Most of the member organizations that are represented in this room today received the government's white paper or proposed implementation plan only in the last 48 or 56 hours. Many of the organizations have not had time to review them with their own executive committee groups to come up with, you know, a position, a formal organizational position. Certainly, the Taskforce, as a collection of almost 30 organizations, has not had the ability, the time that was required in order to be able to make it possible for panel members to present their opinions or views as it were on behalf of the entire Taskforce. So what you'll be hearing over the next two days will be panel members speaking on behalf of their own organizations on these issues. But in saying that, that's not to say that the other member organizations that make up the Taskforce don't support them in their concerns. It's merely to say that they are speaking on behalf of themselves or on behalf of their own organizations. So, again, my thanks to everybody who helped make this happen. (Applause.) COL. BAILEY: We had history again. That's the shortest speech of a lawyer I've ever heard in my life. (Whereupon, a brief recess was taken.) MR. SELIGMAN: Hello. My name is Paul Seligman. I'm the Deputy Assistant Secretary for the Office of Health Studies in the Office of Environment, Safety and Health and this is the panel addressing Recommendation Number 4 on Medical Monitoring and Notification. We have with us six panelists this morning. The first one to I guess your left is Dr. Steven Galson. He's the Chief Medical Officer for the Office of Environment, Safety and Health of the Department of Energy. The second panelist is Geoffrey Sea. Geoff, you want to raise you hand and identify yourself? Geoff is the Director of the Atomic Reclamation and Conversation Project. He's a health physicist and an experiment survivor. The third speaker is Dr. David Egilman. Dave, want to identify yourself? David is a clinical assistant professor for medicine at Brown University and is representing the Center for Atomic Radiation Studies. The fourth speaker is Stuart Farber. Stuart, you want to identify yourself? Thank you. Stuart is a public health scientist and President of the Radium Experiment Assessment Project. Our fourth speaker is Paul Schulte. Paul is the Acting director of the Education and Information Division of the National Institute for Occupational Safety and Health, NIOSH. And the last speaker is Richard Miller, right here. Richard is a policy analyst for the Oil, Chemical and Atomic Workers Union. The format will be we will give each speaker seven minutes to make a presentation. We'll go in the order that I've introduced them. I will moderate this first session. Upon completion of the presentations, which I hope we'll have done by the break at 10:45, we will have an opportunity for a panel discussion for about 15 minutes and then an opportunity for 45 minutes to an hour for questions, answers and discussion from the audience. So without further delay, since I know the speakers on the panel have a lot to say and there's a lot to be said about this particular recommendation, why don't I turn it over to Dr. Galson and get we'll get started. DR. GALSON: Thanks, Paul. A little bit more introduction. As you've heard, I'm a physician. I'm with the U.S. Public Health Service. I have specialty training in internal medicine, preventive medicine and occupational medicine. And as you heard, I'm the Chief Medical Officer in the Office of Environment, Safety and Health at DOE. I've been working intimately on this issue for the last several years and I really look forward to interacting once again with many of the members of this group, those who I know and those who I've not yet met. This recommendation is perhaps the most contentious in the Advisory Committee reports. The scope that the Committee decided to chew off in the way they worded this one is huge. It involves all of the government agencies that are participants in the Interagency Working Group and a few others. It involves public and private institutions that stretch across the land. It raises many questions if the government does not accept the recommendation as if, what our capacity as a government is to act, whether we could really do anything other than what is in this recommendation and pull it together. So it raises a lot of questions. It's very complex. I know there are a lot of important view among this group that I want to hear, so I won't take up my whole seven minutes. The first thing I want to do is read the recommendation. This recommendation in particular I believe the Advisory Committee spent a long time choosing every single word. And that's why I want to read it word by word the way they said it. I'll perhaps change the emphasis a little bit, but to start out doing that. Then what I'd like to do is talk to you a little bit about the criteria that they used in applying the recommendation to the experiments they looked at and then some features of what they wrote in their more extensive explanation of the recommendation. In the research that we reviewed for this recommendation, the Advisory Committee has found no subjects of biomedical experiments for whom there is a need to provide notification and medical follow-up for the purpose of protecting their health. In the event that other experiments come to light in the future, we recommend that subsequent decisions for notification be based on evaluation of both the level of risk and the potential medical benefit from medical follow-up of exposed individuals. Additionally, the Advisory Committee has found no evidence to indicate that the subject of human radiation experiments we reviewed would have greater likelihood of incurring genetic inheritable effects than the general population and thus does not recommend notification or medical follow-up for descendants of subjects of human radiation experiments. Now, what the Advisory Committee did is apply a two-part sequential guideline in looking at the experiments and coming up with that recommendation. The first was whether subjects of the experiments were placed in increased lifetime risk of developing a fatal malignancy. They set the level of this risk at one in 1,000 for the remaining years of life for the experiment victims. This is a very unusual way of describing the risk. As far as I know, it's not really compatible with any of the federal guidelines for determining risk in legislation and other recommendations. But nonetheless, it's I think fairly clear that they meant to say that if the risk of developing cancer is greater than one in 1,000 for the years of remaining life, then they were concerned and they applied the second guidelines, which is that there be recognized medical benefit to early detection. What this criteria assumes is that all medical interventions do not in fact help the patient. Some of them may harm the patient. And they wanted to apply the criteria so that if the risk threshold was met there was an intervention which was reasonably demonstrated to help the patient as opposed to potentially hurting the patient. This is very important as those of us who've worked in surveillance and notification projects know. So that's basically what they did. They looked at 21 studies involving three types of experiments. Now, they admitted and I already mentioned this is not all-inclusive. They didn't look at every single experiment. This was well beyond both their charge and their abilities to look at every single experiment and every single person. So they choose these three. These were children who received iodine 131, prisoners subjected to testicular radiation and children and military personnel exposed to nasopharyngeal radium treatments. Now, as you know, they did not find in either of these three cases those two criteria were fulled. Therefore, they didn't recommend further notification and follow-up. Now what I'd like to do is mention a couple of features of the many pages of text that follow the recommendation. I know I've generalized here and I already hear there's some disagreements with what I'm saying over here. AUDIENCE PARTICIPANT: You're reading -- you read that correctly. DR. GALSON: Thank you. So, I look forward to hearing about them. Let me just get finished. There are a couple of important features in what the Advisory Committee said. The first is that if new methods of screening are developed or new information about risk comes up, then they believe that the experiments warrant reevaluation. So they have not shut the door on the work that they've done. They've not said this is the final answer. They've said that if new science arises or new information, they believe the entire question warrants reevaluation. That's very important. Although they did not review all experiments, they suggested that they felt that if they did, it would be unlikely they would find anything different than what they found. Now, this is a very subjective finding. I know people will disagree with it. But they did look at that possibility. They raised the possibility the experiments to satisfy the criteria will be identified in the future. Again, they didn't shut the door. Even if follow-up is found to be warranted, unfortunately, we don't have lists of experiment subjects for many, many -- probably most of these experiments. They also recognized, as I've mentioned already, that screening the wrong people may have no benefit and in fact may cause harm. The last feature that I wanted to emphasize before I stop is that with respect to one of the three groups, the nasopharyngeal radium treatment subjects, there is a separate government action plan that goes beyond -- already goes beyond the recommendation of the Advisory Committee. I don't have time to go into the details of it. There are a number of experts here in the room from the CDC and the VA who can talk to that. I'm sure it will come in the detailed discussion, but realize that already the government's gone beyond the Advisory Committee recommendation in that respect. So with that, I'd like to stop and go on to the next speaker. Thanks. |