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2. SCREENING OVERVIEW 14 consideration is an imaging study (for example, a chest x-ray, a CT scan, or an ultrasound procedure). Such studies can produce more than one result, not just a simple yes or no for lung cancer. For example, a chest x-ray may reveal a tiny nodule, a widened mediastinum, borderline cardiomegaly, and an elevated hemidiaphragm. Each of those findings could incur further workup, and more than one of those observations could be a false positive in an otherwise healthy person. HRSA has asked the committee to make recommendations about the quality of the screening programs the agency now supports in uranium workers and downwinders. The committee is addressing whether there is a sufficient scientific basis for going beyond accepted recommendations for screening the population in general such as colonoscopy, Pap-smears, and mammograms, as well as routine contact with a physician. The major way in which uranium workers, downwinders, and onsite participants differ from the general population might be that they have a higher prevalence of diseases. It remains unclear to the committee whether the increase in prevalence is enough to justify a change in currently-accepted screening recommendations. The committee recognizes that some of the populations involved in the RECA screening program may be medically underserved and ones that are perhaps reluctant to make contact with the medical system (for example, native Americans). In those settings, the committee suggests that it might be more beneficial to provide additional resources to facilitate such contact rather than to devote resources to enhanced screening. Once such contact has been established, generally accepted screening and preventive health recommendations could suffice (see U.S. Preventive Health Services Task Force, Canadian Task Force and American College of Physicians recommendations). The committee suggests that both current grantees and new applicants for funding under this program address the general principles of screening and the special concerns raised in this section about the proposed screening program. As is the case with many population-based programs, one must distinguish between benefits (and harms and costs) to individuals and to the population in the aggregate. One must also appreciate that such medical benefits may be limited by the age and co-morbidities of individuals in the population proposed to be screened. Although the benefits and harms of a screening program affect individuals, each of whom will make an informed choice about participation and each of whom will or will not have one or more of the diseases in question, decisions about the structure of each screening program (and, in fact, whether to offer a screening program) are typically made at the population level. 2.1 ETHICS OF SCREENING The decision to screen, especially beyond the accepted recommendations for screening, the population in general needs to involve the physician or other health-care
2. SCREENING OVERVIEW 15 workers and the participant. At the one extreme, overriding or ignoring a personâs freedom to participate in medical-decision making (in this case, the decision to be screened) is generally supported by the principle of nonmaleficenceâthe belief that ignoring or overriding the patientâs wishes will prevent the patient from harming himself or herself. When justified for this reason, the action is paternalistic. The easiest type of paternalism to justify ethically is a weak form, wherein the personâs freedom to decide is hampered, that is, the person is substantially nonautonomous (Beauchamp and Childress, 2001). But many things affect oneâs ability to govern oneself, including age, education, and socioeconomic conditions. Erroneous beliefs about the efficacy of medical practices affect the degree to which a person can make independent choices. In some populations covered by RECA, people may come from cultures that either devalue modern medicine or supplement it with alternative medical practices. A participantâs beliefs about the effectiveness of allopathic medicine or alternative medical practices are not by themselves sufficient evidence to judge that a participant lacks the characteristics needed to exercise independent judgment. At the other extreme, the decision of whether to pursue screening protocols might be thought to rest solely with the individual. This view is supported by the principle of autonomy. However, the screening practice introduces the risk of ignoring medical realities that may ultimately harm the subject. It also denies the validity of other ethical considerations derived from values of equity and justice. Among those considerations is the wise allocation of resources available to HRSA, under the RECA legislation, for a larger good. The committee, in its initial meetings, considered those issues and decided that further definition was needed for the different populations and conditions in question. The ethics of screening is a complex matter. The costs and benefits of screening are often uncertain and, as is the case for some underserved RECA populations, other diseases (such as obesity-related diabetes) are increasing much more rapidly than the compensable diseases for which screening might be considered. The committee noted the 131I screening recommendation made in the 1999 Institute of Medicine-National Research Council report Exposure of the American People to Iodine-131 from Nevada Nuclear-Bomb Tests: âIt is appropriate for a clinician who sees a concerned patient to discuss that patientâs concerns and history and decide jointly about screeningâ (IOM-NRC, 1999, p. 108). Patients and physicians should share in decision-making. This is particularly important in situations where the balance between risks and benefits is uncertain. To this end, it may be wise for the grant proposal process to include information to educate the proposers about the current knowledge of the linkages between carcinogenic and noncarcinogenic disease and radiation (e.g., the points highlighted in Section 1 above), so that the grant awardees can properly advise their participants.