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Appc~i~ B Summary of the Public Session 81

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82 The ALL Thyroid Function Study guidance on infonned consent may have existed in the AAL at that time, and what they could remember about studies conducted by Drs. Rodah! and Bang. This testimony was requested in order to provide necessary background primarily on the role and day-to-day function of the AAL in the 19SOs time period. The following discussion sumxnarizes, but does not include in complete detail, the information obtained by guests at the public session. Information was provided by the Director of the Alaska Division of Public Health of the Department of Health and Social Services on State of Alaska current health concerns and programs, and its scientific and ethical concerns regarding human medical experimentation of Alaskans and military men during the period of the Cold War, and the iodine li3{ studies in particular. He provided information to the Committee on the efforts of the state to Reprove health conditions in Alaska. He also provided detailed information on the changes in causes of death between the 1950s and the 199Os, but was unable to provide a breakout of information on thyroid cancers and related deaths in the state. A retired Director of the Public Health Service Alaska Native Medical Center in Anchorage who is currently a professor at the University of Alaska in Anchorage spoke to the Committee on the subject of 1950s medical practice in Native and local communities of northern and central Alaska. He provided extended testunony on the functioning of the AA~ and the ANS, as well as the existence of private and public medical care in the state for the Native communities during that tune. His own expertise included knowledge of the history of medical practice in Inupiat populations; he is the compiler of an extensive bibliography and several articles on the subject. Two former researchers from the AAL now living in Fairbanks and a researcher now in Los Angeles provided testimony to the Committee about the working conditions and organization of the AAL during the period 1955-1957. They told the Committee about the relationship Between the AND and the stall ot the AAL, methods used to get military and Native volunteers for medical studies, what guidance on informed consent may have existed in the AAL at that time, the organization and running of the analytical laboratories at the AAL, and what they remembered about studies conducted by Dr. RodahI. One of the speakers was the director of the analytical laboratory at the AAL in the 1950s, another worked as a technician in the physiology laboratory with Dr. Rodah! at the tune of the li3i experiments, and He third had conducted extramural research at the AAL during the late 1950s. The former technician recalled that the study had originated from the observation that some individuals of the Alaskan interior showed evidence of modest thyroid enlargement and Dr. Rodahl decided to study it to learn about its causes. A representative of the Mayor's Office of Point Hope village told of the frustration in his community because there was no information on who had participated in the li3~ study from Point Hope. He explained that his village had a high rate of cancers, bird defects, and illness ~. . t ~ _ * ~. ~. ~ - ~. ~ ~

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Appendix B 83 and did not know why. Point Hope, he said, was the site of the Project Charioti radiation study in the 1960s, and the villagers were also worried about the effects of radiation from Russian radioactive waste disposal in the ocean where his people fish and hunt. A physician from the Chief Andrew Isaacs Health Center of the Tanana Chiefs provided extensive infonnation on the health services in the interior of Alaska, the difficulties of modern health care delivery in such a rural area, and the most significant current causes of illness and death. She stated that there had been 11 cases of thyroid cancer since 1969 in the hospital records and two deaths from that disease; she had no way of finding the incidence of goiter for the area her health center serviced, but said it was a common problem. With respect to the matter of informed consent, she said that while there are signed consents required now for medical procedures, communication is still a big problem as of 1994-there are no words in the Athabaskan language for radiation or for cancer, and many patients do not understand what they are told by medical specialists. The English language was very late coming into the region, she said. A brother and sister who were 20 year old and 17-year-old (respectively) subjects of the AAL Ii3i medical studies in Arctic Village spoke to the Committee about the conduct of the studies, including the potassium iodide control experiment which they both participated in, and a previous AAL study they took part in during 1952. They also spoke to the issue of not knowing how the subjects in Arctic Village were selected for the study, the Inability of their parents (their father was the village leader) and themselves to speak English at the time and thus to understand what they were agreeing to, their current physical ailments (including thyroid disease) and He illnesses of their children and grandchildren, and the lack of medical follow-up when the AAL research was completed. They testified they did not know what Hey were being asked to do by the doctors, but if they understood what was happening, they would not have agreed to participate. Both said that they had respect for and trusted the physicians; they Nought the doctors had come to help them back In the l950s, but now they said it was not true. A male subject who was originally from Fort Yukon spoke to the Committee about his experience as a subject in medical studies. In great detail he explained how, as an employee of the ondy hospital in his area In Alaska in the 1950s, he was selected as a subject for three separate AAL studies, including a study which required the surgical implantation and removal of sponges.2 He said he also participated in a fours AAL study and an Atomic Energy ' Project Chariot was an environmental study carried out by the U.S. Geological Survey in 1962 at the behest of the Atomic Energy Commission to examine the movement of radioactive materials through tundra. The study was conducted at Point Hope' Alaska, which was a proposed site for the dredging of a harbor using atomic bombs under the "Atoms for Peace" program. Radioactive fallout from the Nevada test site was placed on the ground in Alaska, watered, and traced for a period of days; the resulting contaminated soil was dug up and put in a mound, then marked radioactive. Local opposition to the site's presence resulted in it being removed in 1994. The soil was shipped to Hanford, Washington, for disposal by the Department of Energy. 2The historical report of the AAL for 1 July 1956 to 31 December 1956 (U.S. Air Force, 1956b, p. 37) included reference to the removal of sponges implanted four months previously in subjects Mom Fort Yukon. The sponges were collected for a study on arteriosclerosis.

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84 The CAL Thyroid Function Study Commission (AEC) study in the early 1960s. He said he was not told the capsule given to him in the }~3} study was radioactive, even though he understood what radioactivity was at the the, having read a book about Marie Curie many years before, and spoke English; he said he was given the opportunity to decline, but was paid to participate in the li3} study and wanted to take the test. The daughter of a woman participant from Arctic Village testified next. She said that her mother, who was too ill to speak before the Committee, had uterine cancer in the early 1950s and was chronically ill, yet was chosen for the }~3i study. The mother never spoke English but she had told her daughter she thought the AAL physicians had come to help the villagers, and had trusted them. The daughter mentioned the vilIager's concerns about their illnesses and said that in 1964 the AEC tested the community for exposure to radiation from atomic testing, particularly from eating caribou which had eaten irradiated lichens; she related how one woman who had the highest radiation accumulation had died at an early age. On questioning by the Committee, she said that one woman in her village may have been pregnant at the time she was given the l}3~. She also expressed outrage at the way Alaska Natives had been studied "like guinea pigs." Three concerned citizens knowledgeable in the recent history of Arctic Village and/or this particular study provided testimony to the Committee on the Alaska Natives' participation and difficult living conditions. One of the witnesses supported the contention that one woman from Arctic Village was pregnant at the time of the AAL study, and then mentioned that the mother of the brother and sister who had testified earlier in the day had been blind when the AAL tests were conducted on her. Written testimony was provided to the Committee by the Mayor of the North Slope Borough and Senator Murkowski of Alaska. Both statements were read to the Committee at the public sessions. The Senator, in a letter mentioned in the Preface, shared his concerns about the AAL study and what he would like to see come out of the National Research Council/Institute of Medicine (NRC/TOM) study. The mayor told of his people's worries regarding the different radiation problems his people were exposed to: the }~3} Sway, Project Chariot in Point Hope, and Russian dumping of nuclear waste in the Arctic Ocean. The mayor also asked that the entire Committee travel to the other affected villages and talk to all of the ii31 subjects, plus he requested to review the draft of this report.3 He stated the need to learn why his people were dying of cancers and other sicknesses and not knowing what the causes were. Dr. Kaare Rodahl spoke to the Committee by phone from Norway on the conduct of the AAL study, his training in use of Iambi, training of other physicians in the use of radioisotope administration, the methods used in obtaining Native and military participants' consent, the oversight responsibility of his commanding officer and the Surgeon General of He Air Force, Panel member availability, timing of the study, and fielding prevented the full Committee from travelling to each village. However, the Committee and NRC/IOM staff did make a good-faith effort to contact and obtain information from each known living subject it could locate. The draft report could not be made available to the North Slope Borough as this is contrary to NRC/IOM report policy. However, the draft report received rigorous peer review, including reviewers familiar with Native concerns in northern Alaska.

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Appendix B 85 his relationship with the ANS, the issue of informed consent, and how he viewed his working relationship with the Native communities. Of particular note to the Committee was his statement that he did not consider the hi to be radiation. In his words, it was a medical tracer and was given in such small amounts that he did not need to explain it to the research subjects as a radioactive substance. He also said he admired the Native peoples for their ability to live in ~ ~ ~ ~ ~ ~ A. . . ~ . ~ ,' ~ . ~ . . ~ .~ ~ ~ . SUCh harsh and cold conditions, which was the reason he wanted to see A they had a special adaptation to live in their environment. He told us that from 1950 to 1957 (except for 1952 to 1954, when he returned to Norway) he conducted, directed, and oversaw several of studies on acclimatization to cold. The studies, he said, examined the nutrition, physiology, and living habits of Alaska Natives from a variety of villages. He also said that based on conclusions from previous studies by the AAL that found elevated basal metabolism in the Alaska Natives, he proposed to determine the role of the thyroid in man during cold exposure. In his conversation with the Committee, he also was quite clear in stating that two questions he wanted to answer were if the cold weather somehow stimulated the Natives' thyroid glands and if their thyroid activity was high because of endemic goiter. In the telephone interview at our public meeting, Dr. Rodahl told the Committee that he received the permission of his commanding officer at the AAL to conduct the study, and the headquarters in Washington was also aware of what he was planrung to do. He told us that in order to obtain volunteers for his research he approached the commanding officer (in the case of the military participants) or the village elders (in the case of the Alaska Natives) and explained what was to be done, then asked them to bring the volunteers to him. He said he explained what the purpose of his work was and told them they had the right to refuse to participate, using the village elder as an interpreter with the Native subjects. When he was asked about how he described the radioactive tracer, he told us he did not say it was radioactive because in his opinion it was a harmless medical substance that posed no risk to the subjects due to the small amount of radiation involved. Dr. Rodahl stated in his conversation with us that his research found that salt supplies in the interior villages were not iodized, and a benefit of his work was that it called attention to the problem and the salt supply in the local stores was replaced with iodized salt. He mentioned also that he was in direct contact with the physicians of the ANS who were aware of a goiter problem in those communities, as thyroidectomies had been carried out on some interior Alaskan village members. He told us that in designing his iodine supplement experiment, he was trying to find out if the cold weather was affecting their thyroid activity or if there was some other cause for elevated thyroid activity in this regard he tested some subjects who had enlarged thyroids on purpose. Dr. Rodahl said when his plane landed, the villagers would come running to meet hun and the other physicians who came with hun, and the villagers would immediately want their ailments treated. He said the physicians treated them because they were "medical men." He also said the Natives trusted them and they trusted the Natives. However, he also said the AAL physicians were researchers and believed their study would be of benefit to the Natives by helping understand how the thyroid might be stimulated by cold and what might be the cause of goiter in some of the communities. One former serviceman was contacted by telephone and asked to provide information on his military tour of duty in Fairbanks and his participation in the AAL experunents. He was unable to remember details of taking the Ti3i, but he did recall the method for volunteering,

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86 The ALL Thyroid Function Study consent for participation, and the physical conditions of the exposure to cold. The session was open to the public, and questions were allowed of the participants, including those speaking by telephone, by Committee members and members of the audience. Often, the Committee members were questioned by the audience on various technical subjects regarding radiation, radioisotopes, and medical research in order to obtain better knowledge of the Ii3i study. In many cases, the session became an information exchange for the lay audience to express their concerns over radiation in the Arctic in general, or the actions of the government.