[Congressional Record Volume 140, Number 45 (Thursday, April 21, 1994)]
[Extensions of Remarks]
[Page E]
From the Congressional Record Online through the Government Printing Office [www.gpo.gov]


[Congressional Record: April 21, 1994]
From the Congressional Record Online via GPO Access [wais.access.gpo.gov]

 
             RADIATION EXPERIMENTATION VICTIMS ACT OF 1994

                                 ______


                         HON. EDWARD J. MARKEY

                            of massachusetts

                    in the house of representatives

                        Thursday, April 21, 1994

  Mr. MARKEY. Mr. Speaker, I am today introducing the Radiation 
Experimentation Victims Act of 1994. The recent acknowledgement by 
Federal officials that the Government conducted radiation experiments 
with human guinea pigs grabbed the attention of all U.S. citizens, and 
the reason is that most people assumed that our country would not 
engage in this kind of activity. I think the fact that the Federal 
Government--our Government--funded or engaged in this kind of activity 
is the most disturbing aspect of this whole story. Most Americans 
thought that our country would not take that kind of action. To close 
the door on this regrettable legacy, we should focus on the proper 
remedies to respond to past wrongs, make certain these things can never 
happen again, and do the right thing today by compensating those who 
suffered injury. Accordingly, today I am introducing legislation to 
address past wrongs. My focus is on the Department of Energy, because 
that is the agency with which I have the most experience. My 
legislation has three goals. It is my hope that the administration will 
accomplish these goals before legislation is enacted, but I desire to 
have the force of legislation if the executive branch should falter in 
meeting these goals:
  Require full disclosure from the Department of Energy, while 
protecting the privacy of subjects and their families, on experiments 
with ionizing radiation that provided little or no benefit to the 
subjects and were funded by the Department or its predecessor agencies;
  Require the Department of Energy to formulate a plan to conduct 
proper medical followup of subjects where it seems feasible and 
indicated; and to provide free medical care for injuries related to 
experiments;
  Require the Secretary of Energy, after consultation with other 
appropriate Federal officials, to recommend appropriate compensation 
for those subjects or their families who have suffered damages, and 
make any other recommendation for appropriate compensation for those 
who have been wronged.
  The legislation I am introducing does not impose a particular 
compensation plan, but rather directs the Secretary of Energy to report 
to Congress in 6 months on what should be the appropriate scheme. I 
recognize that there is some debate on the effectiveness of existing 
legislation for exposed atomic veterans and for downwinders from atomic 
tests. In light of that debate, I think it is appropriate for the 
administration to review these and other compensation systems and then 
develop an appropriate system for the victims identified here today. 
The best system would merge science with compassion in determining 
standards for compassion. Provision should also be made for appropriate 
remedies other than monetary compensation to unwitting subjects who 
suffered dignity injury.
  I would like to briefly describe my involvement with these issues. In 
October 1986, I released ``American Nuclear Guinea Pigs: Three Decades 
of Radiation Experiments on U.S. Citizens,'' a staff reports of the 
House Subcommittee on Energy Conservation and Power. This report 
revealed the frequent and systematic use of human subjects as guinea 
pigs, describing 31 experiments in which nearly 700 persons were 
exposed to ionizing radiation that provided little or no medical 
benefit to the subjects.

  The 1986 report also discussed some of the more repugnant or bizarre 
experiments. At the top of this list were the plutonium injection 
experiments, in which patients designated terminal within 10 years were 
given plutonium to determine how the body handled this radioactive 
material. This experiment provided no medical benefits to the subjects, 
and is marred by a lack of informed consent, since even the word 
plutonium was classified during the 1940's. Moreover, as my staff 
report documents, when the Atomic Energy Commission conducted a 
followup study in 1973 to determine the amounts of plutonium remaining 
in subjects' bodies, informed consent was not obtained from patients 
who were still alive, nor from families who were asked for permission 
to exhume the bodies of deceased subjects. Sadly, 30 years later, the 
word plutonium was still too explosive for the Federal Government to 
tell the victims.
  The response of the Reagan administration to my 1986 staff report can 
be described as, ``Thanks for the information, we're not going to do 
anything,'' and the report languished on a shelf at the Department of 
Energy until recently. Then in November 1993, a series of articles by 
Eileen Welsome, a reporter at the Albuquerque Tribune, identified some 
victims of the plutonium injection experiments and their families, and 
put a human face on the issue. Last week, Eileen Welsome was awarded 
the Pulitzer Prize for these articles. When Secretary of Energy Hazel 
O'Leary learned of these experiments and my 1986 staff report, she 
decided that the appropriate course of action was full disclosure of 
all information on experiments with human subjects. In January 1994, 
President Clinton formed the Human Radiation Interagency Working Group, 
and announced that he would establish an Advisory Committee for the 
Working Group. The Advisory Committee is meeting for the first time 
today. I commend the President for his leadership, and I commend 
Secretary O'Leary for her efforts to lift the shroud of secrecy on her 
Department, and bring the questionable past of the Department and its 
predecessor agencies into the sunshine of public scrutiny.
  In another set of experiments which came to light in late 1993, at 
the Fernald School in Massachusetts during the 1940's and 1950's, 
schoolboys classified as mentally retarded were fed radioactive calcium 
and iron with their breakfast meals. Yet parents of these children were 
deceived about the nature of the experiments when they gave their 
consent. With at least one experiment, the letter from the school 
requesting consent never mentioned that radioactive material would be 
fed, noted that experimental subjects were selected from a ``group of 
our brighter patients,'' and implied that the experiment might result 
in ``gains in weight and other improvements.''
  These experiments were funded by the Atomic Energy Commission, the 
National Institutes of Health, and the Quaker Oats Company, and 
research was conducted by faculty at MIT and Harvard. These experiments 
clearly fit within the scope of the documents that I requested from the 
Department of Energy in the mid-1980's, yet they were not reported 
then. With the revelation of the Fernald School experiments, I began to 
question whether we know the full scope of human experimentation; 
whether the 1986 staff report provided a reasonably accurate picture or 
whether the extent of testing was larger.

  This question has been reinforced by findings of the Massachusetts 
Department of Mental Retardation (DMR), which after the revelation of 
the Fernald School experiments launched its own investigation for full 
disclosure. With the assistance of Harvard University, the DMR 
identified additional experiments during the 1960's at the Wrentham 
School, where tiny children as young as two years old were administered 
radioactive iodine to test potential countermeasures to atomic fallout, 
in work funded by the U.S. Public Health Service, Division of 
Radiological Health.
  One reason why I find these experiments so repugnant is because of 
the vulnerable nature of the subjects used. It was no accident that 
students at the Fernald and Wrentham Schools were fed radioactive 
material, and not university students. It is no accident that the 
terminally ill were experimental subjects, including some who were 
comatose. It is no accident that the elderly, soldiers, and prisoners 
were used for testing with radioactive material. Such members of 
society are not fully enfranchised and lack control over their lives. 
They deserve protection, not exploitation as human guinea pigs. 
Certainly, experimental drugs or treatments intended to make the 
patient better may be used. But that was not the case with these 
experiments. We must again look at our ethical guidelines to make 
certain they protect the vulnerable.
  When I released my staff report in 1986, I had assumed that 
experiments of such nature were the product of the arrogance of the 
early atomic age, and the paranoia of the cold war. But as these 
experiments have gained new attention, I have been shocked and dismayed 
to find that individual scientists feel compelled even today to defend 
these experiments of years ago. Some have stepped forward to claim that 
such experiments should not be judged according to today's standards, 
and besides, the doses given were low. To these attitudes, I have two 
responses: First, contrary to such opinions, the 1940's and 1950's were 
not devoid of patient knowledge or ethical standards. Radiation and its 
health effects were widely discussed in the era of bomb shelters and 
air raid drills. Moreover, the Nuremberg Code was in effect, written by 
the United States and the Allies in the aftermath of World War II, and 
it established guidelines on obtaining informed consent for 
experiments. Clearly, the Fernald School experiments violate this basic 
human rights standard.
  In this regard, I commend the recent statement of Charles Vest, 
president of MIT, who acknowledged that while doses at the Fernald 
School may have been relatively low, he was sorry for the experiments, 
because of the children selected and the lack of informed consent. MIT 
explained that President Vest issued his statement because ``it seemed 
the decent thing to do,'' and I applaud his decency.

  I wish to make clear that I consider such ethically questionable 
experiments to be aberrations, and I do not desire to cast doubt upon 
the overwhelming majority of biomedical research, representing 
laboratory experiments, legitimate nuclear medicine for treatment and 
diagnosis, and ethical clinical trials. I have long been a strong 
advocate of public funding for basic research, and I commend those 
investigators who work daily to understand, prevent, and treat disease.
  Nor is it my desire to blame present leaders of organizations and 
institutions for past mistakes. My concern is that institutions work 
with Congress today to do the right thing to address past abuses. I 
therefore welcome the leadership by the Clinton administration, and I 
look forward to working with my colleagues in Congress, the 
administration and its Advisory Committee, and the scientific community 
in formulating proper responses today.
  In March 1994, as part of the administration's commitment to full 
disclosure, Secretary of Energy O'Leary released two boxes of documents 
related to the plutonium injection experiments. I reiterate my 
commendation of Secretary O'Leary, and note that her efforts have 
already produced results not seen previously from the Department of 
Energy. Nonetheless, an analysis by my staff concludes that these 
plutonium papers raise some issues which have not yet been resolved. 
Matters identified, and their relevance to the ongoing work of the 
Interagency Working Group, or of the Advisory Committee, as it sees 
fit, are as follows:
  The precise number of persons exposed to plutonium in experiments 
remains an open question. On this matter, the Working Group is already 
committed to full disclosure on all experiments.
  The plutonium papers indicate, more clearly than material provided to 
my subcommittee in the 1980's, the coordinated nature of the plutonium 
injection experiments, and their connection to other experiments with 
human subjects, specifically injection of plutonium and uranium. It 
seems appropriate for the Working Group to determine to what extent 
experiments represent a coordinated Federal effort rather than a 
collection of isolated studies.
  The plutonium papers suggest that for a brief period of time in the 
late 1940's, the Atomic Energy Commission required that experiments 
with ionizing radiation and human subjects should be conducted only if 
the subjects received medical benefits--a standard similar to those by 
which such experiments are being judged today. If this in fact was AEC 
policy, it must have been overturned or violated by many later 
experiments. It seems appropriate for the Working Group to determine 
what standards were in place in the late 1940's, and whether they 
deteriorated over time.
  In February 1987, the Department of Energy notified me that they 
would not conduct further followup of experimental subjects. However, 
at the same time, the Department was desperately trying to conduct 
followup with the family of a deceased patient, an Australian national 
injected with plutonium before his fifth birthday. It seems appropriate 
for the Working Group to determine the full extent of any followup 
conducted in the 1980's, and evaluate whether the efforts then might 
facilitate followup of subjects now.
  In addition, I want to emphasize the need to maintain the integrity 
of Government records during the search for documents on radiation 
experiments with human subjects. I have recommended that steps be taken 
to avoid review of files by individuals who may have direct conflicts 
of interest.
  In summary, what has been revealed is no less than the frequent and 
systematic use of U.S. citizens as guinea pigs during experiments with 
ionizing radiation. These experiments shock the conscience and demand a 
response. I look forward to working with my colleagues and the 
administration to gain full disclosure of this shameful past, to 
provide the medical followup and treatment that experimental subjects 
deserve, and to take other measures as necessary for restitution to 
those citizens who have suffered injury.

                          ____________________