8
Ethical Framework

Ethics, justice, and equity were recurring themes in the messages of many people who spoke to the committee at its information-gathering meetings in Arizona, Utah, and Washington, DC. Those themes held a central place in the information presented to the National Research Council representatives in Idaho, and in the letters sent by citizens who could not attend an information-gathering session. People wanted the committee to hear their distress over what they believed were past unethical actions or what they perceived as current inequitable legislation. The testimony persuaded the committee to include in this report a discussion of the ethical framework within which the Radiation Exposure Compensation Act (RECA) and Health Resources and Services Administration (HRSA) policies for the Radiation Exposure Screening and Education Program (RESEP) reside. That ethical framework includes

  • The ethics of a compensation program and the concomitant duties to

    • Right a wrong.

    • Ameliorate or restore a loss.

    • Compensate for the effects of a loss.

  • The ethics of medical and compensational screening.

 

We discuss each of those aspects of the ethical framework in the sections below to bring some clarity to the concerns expressed to us by the many people who shared them with us.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program 8 Ethical Framework Ethics, justice, and equity were recurring themes in the messages of many people who spoke to the committee at its information-gathering meetings in Arizona, Utah, and Washington, DC. Those themes held a central place in the information presented to the National Research Council representatives in Idaho, and in the letters sent by citizens who could not attend an information-gathering session. People wanted the committee to hear their distress over what they believed were past unethical actions or what they perceived as current inequitable legislation. The testimony persuaded the committee to include in this report a discussion of the ethical framework within which the Radiation Exposure Compensation Act (RECA) and Health Resources and Services Administration (HRSA) policies for the Radiation Exposure Screening and Education Program (RESEP) reside. That ethical framework includes The ethics of a compensation program and the concomitant duties to Right a wrong. Ameliorate or restore a loss. Compensate for the effects of a loss. The ethics of medical and compensational screening.   We discuss each of those aspects of the ethical framework in the sections below to bring some clarity to the concerns expressed to us by the many people who shared them with us.

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program THE ETHICS OF A COMPENSATION PROGRAM: RECTIFICATORY AND DISTRIBUTIVE JUSTICE1 Justice is the part of ethics that is concerned with fairness. In his work Nicomachean Ethics, the Greek philosopher Aristotle introduces us to justice as a multifaceted phenomenon (Aristotle, Book V), focusing on distributive and rectificatory justice. In our own century, notable work on justice has expanded our understanding of this important ideal (Rawls, 1971; Nozick, 1974). Although scholars of ethics and practitioners of justice have studied the subject of justice since the early Greek philosophers, it is only in the last century that they have focused on rectificatory justice (Roberts, 2002). Rectificatory justice plays the main role in providing an ethical framework for legislation like RECA that seeks to compensate people. Rectificatory justice concerns fairness in transactions between people who have experienced a wrong. The concepts of rectificatory justice help us to understand how to remedy wrongs. Distributive justice concerns fairness in the allocation of a good and helps to answer some questions about how one equitably distributes compensation across a population. Rectificatory Justice Three elements are at the heart of rectificatory justice: a wrong, a loss, and the effects of a loss. Duties or obligations are associated with each of those elements. In the case of a wrong, the duty is to right the wrong; with respect to the loss, the duty is to ameliorate or restore the loss; regarding the effects of the loss, the duty is to compensate for them (Roberts, 2002). Those elements, their concomitant duties, and their remedies are explored below. The Duty To Right a Wrong The committee heard much oral testimony and read pages of written testimony about disease, loss of life, and pain and suffering that were attributed to exposure associated with the US government’s nuclear-weapons program. People called those matters to our attention on ethical grounds, claiming that the federal government had wronged them. What is a wrong? Moral philosophers and legal scholars generally agree that, under the concept of justice, a wrong is related to an action that is taken against another’s rights. How do we tell if an action invades another’s rights? 1   The ethical framework we provide for compensation legislation is similar to the scholarship in legal studies that applies the concept of corrective or rectificatory justice to theories of tort law. The main figures in this field include George Fletcher (1972), Richard A. Epstein (1973), Richard Posner (1981), and Jules Coleman (1982).

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program As one scholar puts it, “If I take something of yours over which you have the power to exclude and alienate, then I wrong you. On the other hand, if I take something of yours over which you have a power only to demand compensation, then (provided I compensate you) I have not wronged you” (Coleman, 1994). Whether or not the federal government and its agents engaged in an unjustified wrong depends on a number of factors. Although stakeholders hold the government responsible, there may have been activities during some periods for which no moral responsibility exists or in which the government was justified in its actions. The need for strict secrecy, the lack of knowledge of radiation effects, and the unavailability of hazard-protection technology in part justified the federal government activities and in other circumstances excused the federal government from culpability. However, as events progressed, and secrecy became less important in achieving desired outcomes, as knowledge of radiation effects increased and hazard protections were available but ignored, the moral responsibility of the federal government and its agents increased with respect to not merely the infringement, but the violation of persons’ rights2 (ACHRE, 1995). There were two common themes in people’s characterization of the wrong. Those who spoke with or wrote to the committee believe that they were disproportionately subjected to unnecessary risks and costs to their health and life. They often asked, “Why did we have to experience these things?” They also believe that it was wrong not to seek their consent to bear the risks. They asked, “Why weren’t we told so that we could have protected ourselves or been protected by our parents, teachers, employers, and others in authority?” One’s life and choices in how to live it are, generally, those things one should be able to retain power over. Many of the people who contacted the committee perceived the actions of the federal government as an invasion of their rights to life and to the exercise of autonomy to make decisions in how to live their life. If these wrongs did occur, how to we right them? What is the appropriate remedy for the wrong incurred? Ethicists agree that an apology is an appropriate remedy (Gill, 2002). The importance of the apology is that it acknowledges the wrong. An apology is a significant part of rectificatory justice. Without an apology, there is no formal admission of moral responsibility. Sometimes the lack of an apology is appropriate, particularly when there is no moral responsibility. When it is not, however—that is, when a wrong occurs—justice requires an apology. The reason is that an apology which is offered in an appropriate form addresses directly the injustice itself; it names the wrong, and it acknowledges responsibility. RECA included a formal of apology in its 1990 legislation. “The Congress apologizes on behalf of the Nation to the individuals described in 2   This passage implies that there are distinctions to be made between moral culpability vs. responsibility and violation of rights vs infringement of rights which we do not develop here. For further discussion see Coleman, 1994.

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program subsection (a) and their families for the hardships they have endured” (Public Law 101-426, October 15, 1990). It is helpful to distinguish righting a wrong from restoring a loss incurred as a result of the wrong. Some people who lived in areas downwind of or were participants at the nuclear test sites, worked in mines or mining operations, or transported the ore may have been wronged. They might not, however, have experienced any loss of health because of the unjust action; they might not have contracted a disease. Not having experienced a loss of health does not negate the wrong. Those people may not need remedies that will ameliorate a loss,3 nor are they owed compensation for the effects of such a loss, but they are owed an apology for having been subjected to the injustice of failing to respect their personhood for no apparent relevant moral reasons. Although an apology is an appropriate response to the wrong itself, it should not be confused with amelioration, restoration, or compensation. An apology is not a form of compensation, and it does not restore a loss. Nonetheless, it is an important element of rectificatory justice. The Duty To Ameliorate or Restore a Loss4 Rectificatory justice is concerned with the loss that may occur when a person experiences a wrong.5 As we noted above, many people who contacted the committee asserted that the losses they experienced were due to wrongs committed by the federal government or its agents. Coleman has put it as follows: “The duty imposed by corrective justice—namely to render compensation—requires not just a loss, but a wrongful one, and not just causation, but responsibility (Coleman, 1994). What constitutes a loss for the RECA population? Some testimony to the committee identified a person’s loss from the time of possible exposure of the body to ionizing radiation under the belief that such exposure permanently altered cell structure. The committee considered the possibility that a loss might be construed as an unknown future harm that is currently present at the cellular level. However, the radiation signature is undefinable in that way. For that reason, we focused our examination in Chapters 4 and 7 on diagnosable diseases. Until a disease presents itself, a person has only an increase in the probability that exposure to ionizing radiation will result in loss of health and life. Those who were exposed only to natural background radiation do not have that increase 3   The loss could include psychological health. RECA does not cover psychological disorders, as defined by the Diagnostic and Statistical Manual for Mental Disorders (DSM), version IV, such as posttraumatic stress disorder, for reasons we discuss in later chapters. 4   Loss and harm are often used interchangeably in law and in common parlance. One could stipulate definitions that would distinguish the measurable damages of losses from the damages that are harder to measure that we call harms. For simplicity, we do not stipulate distinct definitions. 5   Rectificatory justice is also concerned with gains that may occur when a person experiences a wrong. For our purposes in this report we limit our discussion to loss.

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program in probability due to NTS fallout (see Chapters 5 and 7). Nevertheless, some persons assert that having been put at such risk is sufficient to establish a loss. For that to count as a loss under tort law the risk must cause an injury. The type of injury we associate with risk is a loss in security (Simon, 1992; Weinrib, 1987; Coleman, 1982). RECA compensation is not based on that view of loss.6 Nevertheless, as we pointed out in Chapter 6, probability plays an important role in establishing eligibility for remedies once a disease is diagnosed. The remedy for the loss sustained is restoration. “Restoring the exact same thing that was taken ensures that no tangible loss remains accounted for” (Roberts, 2002, page 15). Logically, restoring the loss due to disease means restoring the person to health. Clearly, if life is lost, restoration is not possible; but it is also true that, without returning a person to a premorbid state, restoration in the strict sense also may not be possible. Restoring someone to health is not the same as, for example, returning a stolen necklace to its rightful owner. For that reason, we also use the word amelioration when we describe the remedy associated with a wrongful loss. Amelioration allows us to include a range of medical practices, from screening to medical treatments, aimed at benefiting a person’s health. The medical screening and education program provided by RESEP can be understood as a remedy by forestalling (early diagnosis and care) or ameliorating a loss of health that may have resulted from the government’s actions. Legislators claim to have created RESEP to provide an opportunity for an early intervention to protect against such a loss. Other responses to the ethical concern of amelioration of the loss of health are possible or even morally preferable. For example, RECA populations are unevenly covered through existing additional compensatory legislation for the medical services associated with the eligible diseases. As we saw in Chapter 2, some RECA populations will receive medical services for their diseases from the time they file a successful claim if they also qualify for compensation under the Energy Employees Occupational Illness Compensation Program Act (EEOICPA) and the Radiation-Exposed Veterans Compensation Act (REVCA). Other populations have medical services covered under other programs or hospital practices, such as Medicare, Medicaid, private health insurance, and indigent care. But, none of those programs or practices is intended as a remedy for a loss of health due to a person’s involvement in the development of nuclear weapons. Restoration or amelioration of a loss is not identical with compensating a person for the effects of such a loss of health and life. The distinction does not rest on what can be restored and what cannot be (or is not) restored. It is a distinction between the loss and its effects. The important distinction between restoring or ameliorating a loss and compensating for the effects of a loss was 6   Michael Simon considers that treating risk exposure itself as an injury for which compensation in tort law is possible but rejects this view as incoherent. He argues, instead, for a public law (like criminal law) that provides compensation for victims.

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program expressed in the following statement by Senator Orrin Hatch (R-Utah) on the eve of passage of PL 1515: I am extremely grateful to the interested and concerned constituents who helped in the drafting of the RECA amendments. Many times, their heartfelt stories helped lead to provisions in the legislation which can only help improve the program. For example, in one meeting on the bill held in St. George, Utah, a woman explained to my office that the compensation program, while well-intended, could never make families who had experienced radiation-caused illness whole again. She expressed her feeling that the greater good could come not from compensating individuals, but from instituting programs which will help families detect potential illness earlier, allowing them to be treated more successfully and cost-effectively. From that conversation was born the new prevention grant program, which I believe will prove to be extremely successful. The woman points out the difference between the diseases for which access to successful, cost-effective remedies was not available and compensation paid out which did not affect such health-related remedies. Compensation is not intended to and will not directly restore health or life. However, if some measures are available to ameliorate the loss of health, rectificatory justice requires that they be considered in proportion to the loss incurred. Nonetheless, several people testified about their large medical bills that have exhausted their compensation payments, leaving unpaid balances. The remedy best associated with the loss of health is some explicit provision of medical services for the diseases associated with radiation exposure. RECA does not make that provision; other programs, such as EEIOCPA and REVCA, do. Which measures are taken may be a matter of utility, depending on the costs, risks, and benefits associated with them. We discuss this in more detail, including a recommendation, in Chapter 10. The Duty To Compensate for the Effects of a Loss A loss has its effects, ranging from the immediate pain and suffering due to the loss to longer-term effects in the quality of life that a person experiences. Justice asks us to compensate for those effects, to soften their impact if possible, or to make them easier to bear. What remedy is available to provide for that? Compensation is generally regarded as the appropriate response in rectifying the effects of a loss. Compensation represents an attempt to rectify the imbalance resulting from the effects. Compensation is full insofar as it is equivalent to the value of what is lost, including the cost represented by the pain and suffering associated with the loss. Throughout RECA, compensation is described as partial. Generally, when compensation and an apology are accepted, although the loss has not been restored, the moral debt is met. Not all compensation programs are based on the effects of a wrongful loss. In fact, having to experience the effects of a loss of health and life has been

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program reason enough for the US government to compensate individual citizens and their families. Veteran compensation programs are generally based on that reasoning. In the act of soldiering, when risks are revealed as much as is practically possible and are minimized, no wrong is incurred when a soldier is injured in war, but compensating people for the effects of their loss is nevertheless appropriate. The decision may be made to compensate people for the effects of a loss even if their ownership rights or rights to enjoyment or some other rights were not violated. For example, a group may be compensated for the effects of some loss for the sake of social solidarity, or to send a message of compassion to the larger society even though there is no obligation under a wrongful loss to compensate. Compensation may be offered prospectively to people for their willingness to accept additional risks, such as special payments to military person serving in special capacities or to entities willing to accept environmental risks. We have various reasons for wanting to provide compensation for a loss, but they are not all based in a wrongful loss. According to its history (see Chapter 2), RECA does appear to be based on rectificatory justice. Equity Are there any additional ethical requirements in compensating for the effects of such a loss? RECA stakeholders who testified before the committee were concerned about how compensation was allocated. They pointed to perceived inequities in the eligibility criteria for compensation—differences in age at disease onset, differences in county of residence, differences in diseases compensated, differences in work history or job performed, and difference in access to equitable allocation of compensation based on ethnicity. It is appropriate to challenge the criteria that establish eligibility if like cases are not treated alike. Many uncompensated downwinders found it difficult to distinguish between themselves and compensated downwinders living in nearby counties. To some uranium workers, such as core drillers, there seemed to be no difference between the diseases they contracted and those contracted by their fellow miners and millers. To Navajos, it seemed unfair that the requirements of proof were still impossible for them to produce even though their residence and work history were well known among the members of the Navajo Nation. Finally, researchers who testified to the committee believed that there was little evidence that would establish important differences between hazards to persons living within 300 miles of one of the atmospheric testing grounds and those living within 3,000 miles. Justice seeks to treat people fairly.7 That does not mean that all persons must be treated equally. Distributive justice allows for differences in how people treat 7   Justice as fairness is one of the central ideas of John Rawls. Other conceptions of justice, for example, utilitarian, communitarian, and so on have been advanced by scholars. For a discussion of those theories as well as the distinction between formal and material principles of justice, see Beauchamp and Childress, 2001.

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program each other. People do not need to be treated equally to be treated equitably; in fact, treating people equally may be a violation of equity. To treat people equitably is to give them what is due to them, which is not necessarily exactly what everyone else gets. Equity is a moral concept of right proportionality. Equity allows us to treat persons differently if there are relevant differences between them, but it enjoins us to not discriminate when there are no such differences. Equity requires consistency of treatment. Like cases should be treated alike. The investigations of this committee revealed widespread inconsistencies and differences in who receives compensation for harm incurred when there seem to be no relevant differences between people. As we noted in Chapters 5 and 6, the committee faced the ethical challenge of finding a scientific basis for compensation that enhances equity so that like cases are treated alike. What is it that makes establishing a PC/AS-based compensation methodology equitable? We develop an answer to this below. Causation Tort law seeks to preserve equity by requiring that the same set of conditions be used to establish negligence and eligibility for compensation. A key element of tort law is the establishment of a proximate cause or a “reasonably close causal connection between the conduct and the resulting injury” (Prosser, 1971). An important health detriment that follows exposure to ionizing radiation is the increased risk of developing any of several types of cancers, referred to as radiogenic cancers. Can we say that there is a reasonably close causal connection between the activities of uranium mining, milling, and ore transporting and lung cancer, and other nonradiogenic diseases? We are able to make that claim for miners’ activities, on the basis of the amount of exposure and the observed disease in the miners, but we are less so with respect to the lower doses and risks posed by fallout. Radiogenic cancers can be caused by other agents or factors. No symptom or marker has been identified that unambiguously identifies that an individual cancer was caused by radiation. Thus, when cancer is diagnosed in a person, it is not possible to determine with absolute certainty whether it was caused by radiation or by some other factor. That creates a problem in trying to establish eligibility for compensation for radiogenic cancer. As we noted in Chapter 2, failures to win remediation in the court system led citizens to turn to their congressional representatives for redress through legislation. The legislative history of RECA portrays a weakening of the use of causation as a basis of compensation. That is at least in part because of the difficulties in establishing causation owing to the state of scientific and medical knowledge. On the eve of the passage of the RECA amendments of 2000, Senator Orrin Hatch (R-Utah) stated:

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program Through advances in science, we now know so much more about the effects of that radiation than we did in the late 1950s and 1960s. In fact, we know so much more today than we did in 1990 when Congress passed the original compensation program, the Radiation Exposure Compensation Act. Our current state of scientific knowledge allows us to pinpoint with more accuracy which diseases are reasonably believed to be related to radiation exposure, and that is what necessitated the legislation we are considering today. In cases where there is sound scientific evidence of harm, it is reasonable to award compensation. The science is still evolving, and the committee was especially challenged to find a scientific method with which to recommend a more equitable approach to establishing eligibility for compensation. We believe that the use of probability of causation/assigned share provides this equitably approach to compensation. Compensating on Probabilities Nevertheless, significant ethical questions remain in compensating on probabilities. Those questions become more challenging since knowledge of a disease’s cause in a specific person is almost never known with certainty. At least three questions complicate compensation decisions. First, when there is little way to know whether a given person has sustained a loss to health even if we assume that many people who have sustained it, what is the best way to compensate? Second, as Upton and Wilson (2000) have asked, “How does society compensate someone who has a disease which has a number of possible causes and for which the assignment of causation can only be expressed on a probabilistic basis?” Third, how is fairness achieved in a compensation program for the effects of a loss when those effects can differ widely from one individual to another? We may agree in general that the exposures from nuclear testing and fallout did contribute to some additional cancers, but because each individual’s excess risk could be small in some RECA and other populations, we have little ability to say which cancers were caused and which cancers were not caused by radiation. As we saw in Chapter 5, the PC method seeks to rectify this concern by accounting for the possibility that one’s disease could have been caused by factors other than radiation exposure from the activities associated with nuclear-weapons development. It also provides ways of taking into account age, place and time of exposure, milk consumption, and estimated radiation dose. We saw in Table 2.4 and in our discussions in Chapters 5 and 6 that other US radiation exposure compensation programs (REVCA and EEOICPA) use PC and compensate people by using either a complex formula or a single flat rate. To remind the reader, in 1982, British Nuclear Fuels Ltd. (BNFL) and related trade unions initiated a compensation program based on PC and cancer

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program TABLE 8.1 Ethical Concerns and Remedies in RECA and RESEP Ethical Concern Remedy RECA and RESEP Righting the wrong or injustice itself Offering an apology RECA includes an apology Ameliorating or restoring the loss of health Providing medical services RECA provides no medical services directly; medical services are provided only indirectly to some RECA populations and through other programs, such as REVCA (atomic veterans) and EEOICPA; RESEP supports detection of disease Compensating for the effects of the loss Compensation RECA provides monetary payments at a flat rate mortality. In 1987, the program was extended to cancer incidence, for which people were compensated but at different rates; compensation is awarded on a sliding scale based on selected PC values. Upton and Wilson (2000) suggest that a decision first be made on a sum for compensation for the disease in question and people then be paid a fraction of the sum equal to the sum times the PC, with a de minimis cutoff at some selected figure. Some compensation schemes try to account for the differing effects of a loss. Discussions of the duty to compensate become more challenging if there is very limited information to use in distinguishing the particular people who have suffered losses. Should whole communities, rather than individuals, be compensated? Do the difficulties associated with individualized causation require that we abandon compensation payments to individual persons? Programs that use PC/AS allow the AS to establish eligibility for an individual, not for a community, because of widely varied doses in communities and because of the presumption that individuals sustain the harm. Nevertheless, there is no simple logic that will tell us how compensation schemes should work. It is beyond the scope of what science can tell us. In sum, attending to the ethical foundation of a compensation program is critical. The ethical basis rests in rectificatory justice. It is important to provide the appropriate remedies to the various aspects of such justice. Table 8.1 displays those remedies and the extent to which RECA and RESEP accommodate them. THE ETHICS OF MEDICAL AND COMPENSATIONAL SCREENING The RESEP legislation proposes screening for 19 malignancies in downwinders and seven malignant and nonmalignant conditions in uranium miners, millers, and ore transporters (see Chapter 2). In its interim report (NRC, 2003a),

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program the present committee addressed the ethical issues associated with such screening. Just as the committee expands its discussion of screening in Chapters 9 and 10, it expands its discussion of the ethics of screening here. We necessarily divide screening into medical screening and compensational screening. Medical screening has the underlying purpose of improving health outcomes (see Chapter 9). Most uses of the term screening refer to medical screening. But the possibility of receiving compensation for a detected disease lies in the background of any screening program that RESEP grantees promote, so it is helpful to define another type of screening, compensational screening. Compensational screening has the underlying purpose of identifying persons who may be eligible for compensation under RECA, but not the improvement of health outcomes (see Chapter 10). The populations we visited and the grantees we heard from presented themselves or are recruited for screening both because of its medical benefits and because of the possibility that a compensable disease may be detected. Screening for either of those reasons could be supportive of the other. We pointed out in our interim report (NRC, 2003a) and in Chapter 9 that routine medical screening is generally not recommended for RECA diseases except for cancers of the breast and colon and for chronic renal disease; screening for other cancers is medically problematic. The criteria used to determine whether a cancer screening program is useful are the general principles of screening adopted by most medical practitioners. Therapeutic benefits, high prevalence, perhaps high sensitivity,8 and adequate specificity tests are needed, and these are discussed in detail in Chapters 9 and 10. The same general screening principles affirm the ethical preferability of screening for some non-RECA eligible diseases. In Chapter 9, the committee examines those diseases to determine whether there are sufficient grounds for recommending screening. In a few instances, although the diseases do not have sufficient support for RECA eligibility, the committee nevertheless finds reason to comment on screening for them as a good medical practice. The duty to act beneficently by providing a good rather than the duty to right an injustice by ameliorating a wrongful loss is what justifies this recommendation to screen. Depression is such a disease. Screening is not recommended as a remedy to restore a loss because there is no proven connection between the disease and radiation. It is not justified as a measure of rectificatory justice but HRSA may want to consider screening as a beneficent act. Were such diseases to become RECA-eligible, their screening protocols would probably remain unchanged, but the rationale for screening would change, and the costs of screening could be covered as part of the remedy to ameliorate or restore a loss. 8   A somewhat insensitive but specific test may be reasonable for screening, depending on the circumstances.

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program The committee found that it not only is medically unsound to screen for many RECA diseases but also may be morally irresponsible or unethical. The practices and principles of medical screening are infused with ethical considerations. Ethics is not tacked onto the practices. The utilitarian approach is widely used in the decision to screen. That tradition affirms the use of a calculus to achieve an acceptable balance between the risk of harm and the probability of benefits of a particular action (directly), program, or policy. The moral objective of the utilitarian approach is to determine which action or a rule (indirectly) brings about the greatest good or prevents the most harm. The principle of utility may be applied to both individual actions and population wide programs or policies. Ethical duties (actions or rules) are derivatives of the calculus. That means that how one ought to act or what moral rule one should follow is determined by the value that the action or the use of the rule produces (Bentham, 1961; Mill, 1998). The decision to screen is complex, as discussed in Chapters 9 and 10. The utility calculus is itself complex and based on several assumptions. Insofar as we can rely on the truth of the empirical information used in the method, we have developed a valuable tool for medical screening decisions. Another equally respected tradition in ethics is the deontologic tradition, derived from the Greek word for duty (deon), which focuses on the action or rule itself, and not on its consequences, to determine one’s moral duties. That tradition reflects the primary value that we place on autonomy (freedom) and respect for persons. Actions that reflect such respect for a person’s ability to choose for himself or herself are morally permissible, not because engaging in them brings about some extrinsic value (the greatest good or prevention harm) but simply because of their intrinsic value or rightness. Discussing that other tradition is important when we articulate the ethics of screening. A utility calculus may not have all the answers. A potential RECA stakeholder may ask to be screened for one of the diseases for which the scientific and medical communities do not recommend screening. To ensure that a person’s autonomy is respected, a medical practitioner must take time to inform the stakeholder of the potential harm, the unlikely benefits, and the costs of screening. Valuing autonomy is not necessarily in conflict with valuing utility. Nonetheless, the stakeholder may persist in his or her request for a screening test. The stakeholder’s desire to engage in what is judged to be a futile screening protocol does not oblige a medical practitioner to offer the screening protocol. Respecting the stakeholder’s autonomy might instead entail the negative duty of not preventing him or her from pursuing this course of action. That raises further questions about autonomy and its place in a hierarchy of values, including prevention of harm to the patient (Beauchamp and Childress, 2001).

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program Moral philosophers have given the action of overriding a person’s autonomy for her or his own good a name—paternalism.9 Some instances of paternalism are clearly morally permissible, or even morally required or obligatory, especially when the ability to make informed choices is curtailed by age or inability to comprehend. That type of paternalism is referred to as soft paternalism. Hard paternalism, however, is generally more difficult to defend when informed consent is reliable, because it requires that the stakeholder’s autonomy be overridden in favor of the medical practitioner’s judgment of potential harm.10 The ethics of screening is further complicated by compensational screening. The stakeholder who wishes to be screened (or the grantee who creates screening programs with establishment of eligibility as the primary purpose) is perceived to have miscalculated the real harm of screening with no offsetting or overriding benefits. Again, that might not be true. Knowing full well the harm of screening, stakeholders may wish to exercise their freedom to make a risky choice. A stakeholder’s decision must be truly his or her decision and not the result of having been overreached by enthusiastic and well-meaning medical practitioners or family members. Although persuasion and some forms of influence are morally acceptable, coercion is not. The prospect or hope of receiving compensation exerts its own pressure on the stakeholder. To add to that pressure by recruiting people into screening programs that are unlikely to have medical benefit is unethical. Families that stand to gain from compensation might do well to avoid overzealous screening and wait for postmortem examinations. At the same time, a stakeholder’s decision must be based on information that he or she is capable of understanding (Dworkin, 1976).11 How information is valued complicates matters. In some populations covered by RECA, people come from cultures that devalue modern medicine or supplement it with alternative medical practices. And in some cultures, imparting negative information to a patient may fly directly in the face of cherished values. For example, although their findings apply primarily to traditional Navajos, Carrese and Thodes (1995) conclude that discussing negative information conflicts with the Navajo concept of hozho and was viewed as harmful by the Navajo informants in their study. A participant’s 9   Because the gender of the medical practitioner that prevents ill-advised screening may be either female or male, it might be more appropriate to call this maternalism or parentalism; the common parlance in medical ethics is paternalism, however, and the analysis that makes the important distinction between “hard” and “soft” is historically related to paternalism. 10   Not all instances of paternalism represent the distinction between utility and autonomy. In many cases, the judgments of utility simply differ. The patient may see more benefit in the screening protocol, on the basis of different values and assumptions in the utility calculus, than does the medical practitioner. 11   Gerald Dworkin calls these features of autonomy authenticity and procedural independence.

OCR for page 205
Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program beliefs about the effectiveness of allopathic medicine or alternative medical practices or views about the value of disclosure of risks are not by themselves sufficient evidence that a participant lacks the characteristics needed to exercise independent, nonstandard judgment. To enhance the autonomy of a stakeholder who pursues compensational screening, we advise counseling that provides evidence-based information about screening while respecting a stakeholder’s choice. At a minimum, no stakeholder should be screened for purposes of compensation without first meeting other administrative eligibility conditions—such as residence, occupation, or other criteria, such as PC/AS, if established by Congress. We continue this discussion in detail in Chapters 9 and 10. CONCLUSION In response to the many ethical concerns voiced by the stakeholders and experts who testified before the committee, we provide an ethical framework before proceeding to address the committee’s charge. We clarify and discuss the ethical concerns in this chapter to which we have referred in earlier and upcoming chapters of our report. These concerns are included in two main subjects: the ethics of a compensation program and the ethics of medical and compensational screening.