[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.
____________________