HUMAN RADIATION EXPERIMENTS, 1946-1974 The Clinton Administration's Effort to Find the Facts LIFTING THE VEIL ON COLD WAR SECRETS Since World War II several agencies of the U.S. government have conducted or sponsored experiments on human subjects involving radioactive materials. Much of this research resulted in valuable medical advances like radiation treatments for cancer and the use of isotopes to accurately diagnose illness. However, the Clinton Administration has questions about whether subjects of some of these experiments were treated properly. There are indications that in some cases: (1) subjects may not have been notified that they were participating in research; (2) subjects may not have given proper written informed consent; (3) subjects gave consent, but may not have been fully informed of potential health consequences of the research; (4) research was conducted on subjects who were vulnerable or disadvantaged -- minorities, elderly people, persons with mental retardation, infants, prison inmates, and hospital patients suffering from terminal conditions; (5) some research may have served no apparent diagnostic or therapeutic medical purpose. Information about this research has dribbled out over the years, but the government has never made a true accounting to the American people about this period of the Cold War. The Clinton Administration has now launched a major effort to collect and make public all information we can find about radiation research conducted on human subjects by the government. THE HUMAN RADIATION INTERAGENCY WORKING GROUP At the direction of the White House, the Administration formed a working group of senior staff from several government agencies with potential involvement in human radiation research: The Departments of Energy, Defense, Veterans Affairs, Health and Human Services, the CIA and NASA. Other agencies will be added if necessary. This group will oversee collecting records about human radiation experiments throughout the government. THE INDEPENDENT ADVISORY COMMITTEE ON HUMAN RADIATION EXPERIMENTS In addition, President Clinton has appointed an Advisory Committee on Human Radiation Experiments composed of experts in the fields of ethics, science, medicine, and law from outside the government to investigate the experiments. Their meetings will be open to the public. Records will be collected and preserved in a location where they can be studied by the public. THE HUMAN RADIATION HELPLINE The call you made to the Human Radiation Research Helpline may help shed some new light on the search for records. Your help is valuable because most of the information and records we are looking for is very old. We're not sure where it's been preserved after so many years. Your call may help us find additional information. ANSWERS TO YOUR QUESTIONS o I called the Helpline. What happens now? First we will try to determine which federal agency was responsible for the research you described to us. Information from your call will then be sent to that agency and someone may call you back to get more information. The information you provided will then be combined with information from other callers to give us clues we can use to find records about the research you described. We will collect all the records we can find and bring them together. President Clinton has appointed a special independent Advisory Committee of experts from outside the government to determine exactly what was done by the government and if anything was done improperly. We will also make the records public in one location so they can be studied. o Can I get my own records? If we find them, yes. We have your current address now and can contact you and provide you a copy of your own records. o Where are these records? That's the problem. Some of this research was conducted 40 or 50 years ago and we don't really know where everything is now. Some records are in government files. Some are at hospitals or universities that did work for the government. Some undoubtedly have been destroyed over the years. We have sent people all over the government to search their files and find any information they can so it can be studied. o When will I know something? Unfortunately, we aren't sure. We expect if will take many months to locate records and study them properly. We will be giving information to the press on a regular basis, so you should be able to keep up with the progress of our efforts through your local press. o Will you give my name to reporters? No. We will keep your name and personal information confidential. o What if you can't find my records? Unfortunately, we may not. If you were part of an experiment and your records are missing or have been destroyed, we'll do the best we can to piece together information from other sources, like medical journals and government reports. o Will I get some kind of payment from the government? We can't answer that yet. When the independent Advisory Committee finishes its review, Congress may consider some kind of monetary compensation or other assistance, such as medical follow-up. The Administration will work closely with Congress to address this issue. o Why are you just looking at records from 1946-1974? We're looking at all human radiation experiment records from 1946-1974. In 1974 the Department of Health, Education and Welfare (now Health and Human Services) enacted a set of regulations to protect human subjects in experiments of all kinds. The regulations include setting up local Institutional Review Boards at research sites to review experiments where they are conducted. We won't look at all records since 1974, but we will look at samples to make sure that the regulations have, in fact, worked to protect people. o What happens if someone falsely claims participation and seeks compensation? Providing false information to the Federal Government is a serious crime with serious consequences. o Should I see a doctor? Do so if you feel a need to get a check-up or discuss previous treatment. If we find your records and have any reason to believe you face health risks or need medical follow-up, we'll suggest what you might do then. o Should I refuse to be X-rayed or treated with radiation? No. Radiation has been used safely and beneficially for decades to diagnose and treat many illnesses. Radiation therapy, as a primary cancer treatment, has been partially responsible for increasing the overall cure rate for cancer to more than 50 percent. Approximately 20 million radiation therapy procedures are done annually. MORE INFORMATION AVAILABLE Many callers to the Helpline expressed concern about issues that are not related to the Human Radiation Experiments inquiry. Radiation Therapy The National Cancer Institute promotes the appropriate use of radiation therapy for cancer patients and maintains an information service for patients, their families and health professionals. That information line can be reached by calling 1-800-4-CANCER. The Food and Drug Administration regulates the manufacturers of radiation therapy devices and employs many programs to ensure the devices' safety & effectiveness. The FDA's MedWatch program encourages patients and others to report voluntarily problems observed with medical devices by calling 1-800-332-1088. "Downwinders" The Radiation Exposure Compensation Act provides compensation for uranium miners and "downwinders," individuals who lived in Nevada, Arizona and Utah during atmospheric nuclear bomb testing and onsite test participants who have developed certain kinds of diseases. For information, call 1-800-729-7327. "Atomic Veterans" "Atomic Veterans," those who participated in atomic bomb testing as part of military exercises, may be eligible for benefits through Department of Veteran Affairs, 1-800-827-0365. For exposure data, call 1-800-462-3682. ----------- Published by the Federal Interagency Working Group on Human Radiation Experiments