DOE Openness: Human Radiation Experiments: Roadmap to the Project
Part III: Personal Medical Records
Part III: Personal Medical RecordsCitizens who participated in experiments have medical records of the same type as those created by their personal physicians, whether the experiments were conducted in doctors' offices, research laboratories, or medical facilities such as hospitals and sanatoria. As discussed in part I, these records are distinct from the scientific records of the experiments and must be sought in different places. Medical records, unlike scientific records, will contain most of the information necessary to finding out what medical actions were taken and why specific procedures were followed.
Citizens share ownership of their medical records with their physicians and the medical facilities where they were treated and have the right to copies of these records. The records should be available to the individual or an authorized relative for the asking (though there may be a copying charge). In this part, we discuss how to find personal medical records and where those records may be located.
A Basic DistinctionMany individuals who contacted the Advisory Committee were understandably confused by the difference between the broad array of medical interventions involving radiation and the "human radiation experiments" that the Committee was chartered to review. The difference is this: While medical interventions are not expressly intended to accomplish anything more than therapy, "experiments" are designed to yield generalizable scientific knowledge. This is not to imply that experiments offer no therapeutic benefit (many do), only that they are organized in a different way, taking place in a controlled setting and potentially involving thousands of subjects.
It is not always easy for a patient to tell from circumstances whether he or she is involved in a larger study. One reason for the difficulty is semantic. Some ad hoc medical interventions are loosely called "experimental," meaning that they have not been proven effective or generally accepted as safe by the medical community. Experiments, meanwhile, are commonly known by another name: "human subject research." Matters are complicated by the dual role many doctors play, rapidly switching hats between physician and investigator. Given all this potential for misunderstanding, those who conduct human research are under an acute ethical responsibility to clearly explain the purposes of a procedure in obtaining the subject's consent.
A citizen who believes that he or she or a relative may have been a subject in government-sponsored human research should begin the search for facts in the medical records, which provide the details of the patient's condition and the treatment administered for it. A medical professional should be asked to review these records and check for signs of a research purpose. In many cases, having the records reviewed by a professional will answer most questions and concerns. The next two sections give advice on finding one's records.
Personal Medical Records Created by Physicians and HospitalsPhysicians and medical facilities should be approached directly by the individual or by an authorized relative. As with any request for private information, a request for medical records should be formal, direct, and clear, and it should include significant personal details to assure the identity of the correspondent and, thus, the legitimacy of the request. These details are similar to those needed to request a birth certificate--date and place of birth, parent's names, and so forth. The letter should also include as many details as possible about the circumstances of interest, such as the dates of treatment, the names of the physicians, and any other information that will help locate the records. Institutions may have standard forms that need to be used; if the request occurs at some distance in time or geography, the identity of the correspondent may have to be certified in some way. These are common procedures, designed to protect an individual's privacy by preventing the unauthorized release of information.
If the name of the physician or medical facility that conducted the procedure in question is known but the address is unknown, one of the indexes of physicians and facilities available at a public library should be useful. If the names are unknown, one place to start is with the individual's current physician and local hospital. They may have copies of older medical records because they were authorized to obtain medical histories. They are also likely to have (or to be able to get) information about how to contact physicians or medical facilities in other locations.
If the names of the physician and facility are not readily found, more extensive research in family papers and a broader correspondence with individuals who may have information will be necessary. Former friends, neighbors and co-workers, extended family members, clergy, and any other associates are all potential sources of information, as is the patient's health insurance company. Without the names of the medical personnel and facilities involved it will be very difficult to find records at nongovernmental facilities. If the treatment received occurred in a government facility, see part II of this appendix, which describes how to find those records. Outside the military services and large government research and social benefit programs, however, there are no large lists of individual citizens matched to their medical experiences that would provide the needed information.
Where Else Could the Information Be?In general, unless there are regulations or legal obligations that require other arrangements, records stay where they are created. For example, if a patient was treated at Hospital X, Hospital X is likely to be where those records are kept. It is possible that Hospital X destroys all records that are, say, thirty years old; it is also possible that Hospital X stores those records with a firm that specializes in document storage. In either case, the disposition and location of the records will be known to Hospital X and possibly to no one else.
Physicians and institutions, however, create records other than patient medical records that may also contain important medical information. When asked for medical records, Hospital X may not think of all the records that an individual might find valuable in reconstructing his or her medical history, other records that reflect activities under its sponsorship.
These records may not be coordinated or housed with any of the others. Departmental records at a hospital may be retired with those of the hospital generally or they may not. Departmental records at a university are typically retired to the university archives, usually housed in the university library; a hospital department's records at a university with a medical school may be retired to the medical school library. The academic records of faculty members are treated similarly. Records of private research and personal papers, however, are often given to the faculty member's alma mater rather than to the university where the research was done, so that both locations need to be searched. If the faculty member was a physician, it is also possible that such records were given to the institution where he or she attended medical school rather than to an undergraduate school (and then to the medical school, rather than to the university itself). In either case, it is unlikely that actual patient records would be included in an institution's archives. Many retiring physicians offer former patients (or their successor physicians) their files or may destroy these records if the patients cannot be reached.
As reported to the Advisory Committee, in some cases (see part II of this appendix) federal agencies will help citizens locate or retrieve records that were created or are held by nongovernment organizations or individuals.