Ethical and Societal Considerations in Breast Cancer Screening

Plain Language Summary

Breast screening is a large public health program with a significant reach. It is shaped by existing patterns of acting and reasoning, and challenges us to think differently about society and ethics.

Social attitudes about the breast affect attitudes toward breast cancer. The symbolism of the breast (motherhood, sexuality) means breast cancer is a highly emotive issue and breast screening is a popular media story. This may contribute to the popularity of breast screening. Screening may, in turn, affect social attitudes about breast cancer via its contribution toward increasing public familiarity with this disease. Breast screening has arisen within the context of (and may have contributed toward) increasing tendencies in society to place responsibility for health upon individuals, and to be aware of and averse to risks. Similarly, breast screening has arisen within and may have contributed toward a biomedical culture that exhibits strong support for early detection of cancer, technological innovation, and evidence-based medicine. Breast screening is a powerful public health institution. Part of its success may be due to key stakeholders having multiple reasons to support and promote its continuation, strong breast cancer advocacy, and political popularity.

There are several ethical principles relevant to breast screening. There are debates over the extent to which breast screening respects these principles, and over how to prioritize principles in order to deliver the most ethically justifiable program.

Breast screening should deliver benefits, avoid delivering harms where possible, and should deliver more benefits than harms. It seems likely that breast screening reduces population breast cancer mortality in women aged 50–69 years and delivers a range of harms, but there are debates about the extent and significance of each of these consequences. Benefits and harms appear to be closely balanced. Involving consumers at various levels may help with comparing benefits and harms, and negotiating between principles. Breast screening should deliver the most benefits possible within the resources available. The cost-effectiveness of breast screening compared to other healthcare expenditure is controversial, and cost-effectiveness arguments relating to participation rates may be problematic. Breast screening should respect and support individual autonomy: facilitating informed choice is an important part of this. There is disagreement over the impact of informed choice policies on costs and participation rates, and over how much this matters. Breast screening communications with consumers should be honest, and decision-making procedures should be transparent and just. Breast screening policies may be biased if decision-makers have vested interests, including professional interests. Honest communications may be facilitated by removing participation targets or using independent experts. Vested interests could be declared, or managed by excluding conflicted parties from decision-making. Breast screening should operate justly, providing fair screening opportunities, and achieving fair breast cancer and general health outcomes. Implications of the principles of reciprocity and solidarity for breast screening remain complex and caution is warranted. Like any public health program, breast screening inevitably has social and ethical implications: we suggest these will become increasingly central in future policy and practice.

Introduction

In this chapter we consider the social and ethical dimensions of breast screening. Breast screening is grounded in science, but it is also part of society. Like any large-scale public health program, breast screening exists in a two-way relationship with the society in which it is located, being subject to the values and conventions of that society, but also influencing future social attitudes, values, and practices. We will look at the many ways in which social structures and conventions, and moral and ethical thinking, interact with breast screening policies and practices. Our discussion is in two main sections. First we consider social aspects of breast screening: societal attitudes and ideas that influence or are influenced by breast screening. Second we examine ethical aspects: considerations about right and wrong with regard to breast screening.

Social Aspects of Breast Screening

Social norms and structures interact with breast screening in many ways. They may act as facilitators or barriers to the implementation of and public participation in breast screening, and may themselves be influenced by breast screening policies and practices. Below we discuss key aspects of the interactions between society and breast screening, focusing on those that have been most studied and discussed in academic and lay literature.

Social Attitudes Toward Breasts and Breast Cancer

Breast screening is influenced by more general social norms and values regarding the breast itself. Because the breast is associated with sexuality and motherhood, disease and treatment of this organ is highly emotive and associated with particular fear and anxiety. Women may feel embarrassed about breast disease, and hesitate to seek medical attention for breast symptoms. Breasts, particularly youthful looking breasts, are a popular topic for the media, raising the profile of breast cancer higher than might be expected from its medical impact alone and higher than for any other cancer. This media coverage is an important source of information for many women but is also skewed toward reporting breast cancer in young and attractive women, despite breast cancer incidence being much higher in older women.

Many authors have suggested that both breast screening itself, and public communication encouraging women to participate in screening, have changed the way that breast cancer is understood in society, and may also have changed the profile of the disease itself. Most authors agree that the introduction of screening has coincided with a sharp and sustained increase in breast cancer incidence and prevalence. The rise in incidence may be at least partly due to overdiagnosis. Similarly the rise in prevalence may be inflated by a combination of increased lead time and improved survival as a result of screening, along with contemporaneous improvements in treatment. The impact of this increase on the number of breast cancer patients and survivors has been discussed by many writers, some of whom hold potentially conflicting views. It is suggested that breast screening may have:

1.
reduced embarrassment and nihilism about symptomatic disease, thus facilitating earlier presentation;
2.
artificially inflated fear of breast cancer death;
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artificially inflated belief in breast screening benefits; and
4.
made women vulnerable to overmedicalization, leading them to demand screening and precautionary treatment even when it is unlikely to be beneficial.

Some authors are particularly critical of the use of fear in breast cancer or breast screening communication. They point to the media presentation of breast cancer as a mysterious, increasing, frightening “epidemic,” predominantly striking premenopausal white women in their prime years. These authors point to the inaccuracy of this depiction, and some suggest it has been deliberately engineered as a tool to encourage participation in screening.

Summary: social attitudes toward breasts and breast cancer

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The symbolism of the breast (motherhood and sexuality) means breast cancer is highly emotive and breast screening is a popular media story, potentially contributing toward attitudes toward breast screening.
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Screening may affect social attitudes about breast cancer via its contribution toward increasing public familiarity with the disease.

Sociology of Health and Illness

Breast screening resonated with general cultural and social trends in the second half of the twentieth century relating to health risks and responsibilities. Many authors note an increasing expectation, beginning in the 1970s and 1980s, that individuals could and indeed, should, make “lifestyle choices” to improve their health. These authors suggest the introduction of breast screening has contributed to a “personal responsibility” model of breast cancer, by providing an opportunity for women to take individual responsibility for breast health. There are two concerns with this model: firstly, the opportunity to participate in breast screening may have become a social obligation, with normative repercussions and judgment against those who do not screen, especially if they get breast cancer. Secondly, there is concern that preoccupation with screening may have deflected attention from studying other methods of breast cancer control such as primary prevention.

Other writers have noted an increasing tendency to subject ourselves to medical attention, including widespread general enthusiasm for testing and screening. Relatedly, sociologists have extensively documented the increasing risk awareness and risk aversiveness that characterizes contemporary society. This seems especially pertinent here, as women have been shown to be particularly aware of themselves as being at-risk for breast cancer as opposed to other conditions, and to overestimate both their risk of dying from breast cancer and the protective benefit of mammography.

Summary: sociology of health and illness

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Breast screening fits with the increasing tendencies of society to place responsibility for health upon individuals, and to be aware of and averse to risks.

Biomedical Culture

Breast screening has arisen in the context of prevailing biomedical paradigms regarding cancer growth and control, the use of technology and evidence in medicine. Breast screening, as an important practice in preventive health and medicine, has arguably contributed to these paradigms. We discuss each of them below.

The first example of the relationship between breast screening and biomedical paradigms relates to the conceptualization of breast cancer as a disease. For decades breast cancer has been (dominantly) understood as having a linear growth pattern progressing from a localized focus of dysplasia or in situ disease, to invasive and potentially metastatic cancer. This helps to explain the inherent acceptability of breast screening as a policy. The most successful methods of control for women without specific genetic abnormalities have been assumed to be early detection and intervention and this has contributed greatly to the widespread support for breast cancer screening among the medical profession. Although this paradigm is still dominant, some writers are challenging its hegemony, suggesting that some breast cancers may regress or adhere to nonlinear growth patterns. It remains to be seen whether these or other theories become more widely accepted and influence the future of breast screening.

Breast screening is seen by some writers as an example of the technological imperative in action: that is, some propose that screening was adopted in part because both women and experts believed in the technology itself. The implication here is that belief in the technology may have been at least as significant a factor in the popularity of breast screening as evidence of benefit. This is particularly discussed in relation to the encouragement of women under 50 to participate in breast screening, despite lack of evidence about benefit for this age group in early randomized controlled trials (RCTs). More recent developments in breast screening suggest that the technological imperative may be losing force as we learn from past experience: newer screening modalities that appear to offer increased test sensitivity are being approached with some caution and concern regarding overdiagnosis.

The rise of evidence-based medicine (EBM) has paralleled the production of evidence about breast screening. Breast screening proved to be highly conducive to epidemiological study, and the large amount of RCT and other evidence generated around this topic was an important reason for its broad acceptance by the biomedical community. In turn, it may be that the perceived success of (evidence-based) mammographic screening programs gave a boost to the EBM approach.

Summary: biomedical culture

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Breast screening has arisen within the context of, and has contributed toward, the culture of biomedicine.
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Breast screening has supported and been supported by approaches to the early detection of cancer, technological innovation, and EBM.

Commercial and Institutional Aspects of Breast Screening

Breast screening has become heavily institutionalized in Western society and culture. Many writers express concern about commercial interests in this process. They point to a range of actors including pharmaceutical companies, equipment manufacturers, professional medical organizations, and corporate donors who are doubtless motivated strongly by the desire to prevent women from dying of breast cancer, but have additional commercial interests.

Breast cancer advocacy is one notable institution related to breast screening. Breast cancer advocacy groups are large, powerful, and highly visible social institutions with recognizable symbols (pink ribbons) and traditions, such as the Komen Foundation Race for the Cure. Although not the first major disease-specific advocacy group (this belongs to HIV) breast cancer advocacy has, arguably, led the way in ensuring that consumer voices are taken seriously as a legitimate form of public opinion and power. Many breast cancer advocacy groups believe strongly in early detection by screening and campaign for screening resources and services. Some authors suggest that the symbolic significance of the breast previously discussed makes it easier to raise funds for breast cancer causes (including breast screening) than for some other conditions, helping to explain the relatively strong funding base and profile for breast cancer advocacy.

Summary: commercial and institutional aspects

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Key stakeholders may have commercial interests that influence their participation in breast screening.
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Breast cancer advocacy is powerful and bolsters support for breast screening.

The Political Nature of Breast Screening

Many authors have ascribed the political popularity of breast screening partly to its easily quantifiable outcomes, which can be readily presented as success stories, but more importantly to its role as a “women’s issue” that will attract votes. Breast screening is seen as a “safe and noncontroversial” women’s issue, unlike, for example, abortion or domestic violence. This is illustrated by the willingness of women in political life to be candid about their breast cancer experiences (think here of Betty Ford or Happy Rockefeller). By contrast when Janette Howard, wife of the then Prime Minister of Australia, was diagnosed with cervical cancer her disease was not made public.

The lively advocacy environment surrounding breast screening also illustrates its political nature and contributes to the frequent politicization of breast screening. For example, when the 1997 Consensus Conference by the US National Institutes of Health (NIH) removed its endorsement of routine screening for women aged 40–49 years, suggesting instead that it be a personal decision, many advocates organized against the change. Their political influence was strong enough to encourage the US Senate to pass a resolution urging the NIH to reconsider, and ultimately the NIH re-endorsed routine, annual mammography for this age group. Twelve years later, breast screening again returned to the center of political attention. In 2009 the United States Preventive Services Task Force (USPSTF) also recommended that screening for younger women (aged 40–49) be an individual choice rather than standard practice, provoking immediate and intense condemnation by advocacy and clinical leaders. The US Department of Health and Human Services quickly issued a statement to distance itself from the recommendations, stating that federal breast screening policy would remain unchanged and assuming that private health insurers would follow their lead. The US federal health insurance program Medicare continues to provide coverage for annual breast screening from age 40.

Summary: politics

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Breast screening tends to be both politically popular and politically contested, which influences the design of policy and practice.

Ethical Issues in Breast Screening

Readers will be familiar with the idea of planning and evaluating screening programs against public health, economic, and perhaps legal criteria. Although many of these evaluative criteria include implicit ethical principles (such as maximizing benefits, minimizing harms, and more recently, respect for autonomy voiced as requirement for informed consent) a formal ethical approach can provide additional value. First, it can provide depth of analysis, making arguments for why principles are important and should be upheld. Second, it draws our attention to additional considerations that have not traditionally appeared in screening ethics frameworks. For example, ethicists focused on screening have not only written about why it might be important to obtain informed consent for screening but also about the tensions between promoting individual health, promoting community health and respecting autonomy. They have also considered the ethical implications of professional, institutional and consumer tendencies to start and, once started, to continue preventive screening programs and to under-recognize the potential for this screening to do more harm than good.

The ethics of screening are made more complicated by its location on the boundary between clinical and public health practice. Although some of the ethical issues faced by clinical medicine versus public health are similar, others are quite different. Many readers will be familiar with the Beauchamp–Childress principles for clinical ethics (respect autonomy, do good, avoid harm, seek justice): in recent years authors have proposed alternative sets of principles for public health ethics. We will consider both clinical and public health principles, beginning with those that are more frequently discussed and debated within breast screening. Note that some of these principles are more contentious, and so require more space to discuss. This is not meant to imply any greater importance, but might suggest these issues are deserving of greater societal debate.

The public health ethics and screening ethics literatures suggest the importance of these ethical issues when evaluating breast screening :

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Maximize health benefits
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Minimize harms
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Deliver more benefits than harms
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Deliver the most benefit possible within the resources available
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Respect autonomy
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Maintain transparency, including communicating honestly
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Distribute benefits and burdens justly
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Uphold reciprocal obligations
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Act in solidarity with others

We will consider each of these in turn.

Maximizing Health Benefits Through Breast Screening

The goal of improving the health of populations is central to public health practice. There has been considerable debate over the degree to which public health policies should deliberately contribute to individual and societal well-being beyond physical health, an issue we will consider later in this chapter. In this section we concentrate specifically on health benefits. In general, a program that delivers greater health benefit can be considered more justifiable, primarily because—in many ethical traditions—good consequences have moral value in themselves. In addition, delivering these benefits keeps the promises implicitly or explicitly made about the program.

Public health is generally characterized as being concerned with health benefits in populations rather than primarily focusing on individuals . In population breast screening, for example, a public health perspective would predominantly focus on the degree to which screening increases the longevity and quality of life of women on average across a population, rather than being concerned with benefit delivered to individual women. It is useful to consider the distinction between benefits to populations and benefits to individuals since it is less clear than it may seem, especially for an activity like screening. This is in part because benefits to populations are of more than one type. They include all of the benefits experienced by individuals added up ( aggregative benefits ) but many public health programs also provide an additional benefit, sometimes called a corporate benefit , that occurs at the population level only. For example, vaccination programs deliver aggregated benefits (all of the instances of personal protection via immunization, added up) but also corporate benefits (the herd immunity that arises only after a certain proportion of the population is vaccinated, and which protects even those who are not vaccinated). The various aggregate and corporate benefits of breast screening are discussed below.

Breast cancer mortality benefits

Breast cancer screening delivers breast cancer (disease specific) mortality benefit for some age groups. The introduction of breast cancer screening into a population has been shown to result in a reduced population breast cancer mortality rate. This is mainly because some women who are screened derive benefit from their participation (the sum of which provides an aggregative benefit) although the existence of breast screening may also provide corporate benefits to women in general (discussed below).

For some public health programs, aggregative population benefit is widely and equally distributed among most people. For example, in vaccination programs where most children participate, the benefit is approximately the same for each child. Not so for the breast cancer mortality benefit of screening: most women who attend breast screening receive no breast cancer mortality benefit at all, and attending screening will not make any difference to whether or not they die of breast cancer. This is because most women, screened and unscreened, will not develop breast cancer. Of those women, screened and unscreened, who do develop breast cancer, many will not die from it if they undergo current treatment regimes. Still others, sadly, will die from it regardless of whether or not they attended screening. It has been calculated that less than one in seven women who are screen-diagnosed and treated for breast cancer receive mortality benefit from their screening. Thus the aggregative disease-specific benefits of screening clearly exist, but are unequally distributed in the population, being derived from a small number of women.

This aggregative benefit from a small number of women remains the dominant driving force behind mammography screening. Recent attempts to quantify breast cancer mortality benefit suggest that screening is less beneficial than was calculated in most of the early RCTs, partly because of revised calculations from the original studies, and partly because of recent improvements in treatment, which reduces the margin for benefit from interventions such as screening. Writers also express concern that breast cancer screening has very little impact on all-cause mortality.

The likelihood of deriving breast cancer mortality benefit from screening may vary between women and between populations of women. Individual women at increased risk of dying from breast cancer will be more likely to derive benefit from screening, and conversely those at decreased risk will be less likely to derive benefit. The latter group includes young women (since they are much less likely to get breast cancer than older women) and women who are more likely to die from other causes (eg, due to age or significant comorbidities). Similarly, populations of women with a higher incidence of breast cancer will derive more absolute mortality benefit from screening, and populations with a lower incidence (eg, communities in many parts of Asia ) will derive less benefit. This raises questions regarding screening policy, and the extent to which programs should consider themselves obliged to focus screening on those subpopulations of women which are most likely to experience an (aggregative) mortality benefit. Thus far, within a given population, outside of age and (uncommon) genetic markers, most risk factors for breast cancer are modest and thus of limited use in stratifying screening. Recent research on risk factors such as family history of breast cancer in first-degree relatives, and personal breast density may alter this. Women in their 40s at high risk of breast cancer may have similar benefits and harms from breast screening as average risk women aged 50–74, and thus might consider screening at an earlier age.

Breast cancer morbidity benefits

Breast cancers identified through screening programs tend to be smaller and more amenable to breast conserving treatment than cancers that present symptomatically. This is often mentioned as a benefit of breast screening programs but is controversial. If the breast cancer detected was destined to progress and become more difficult to treat, then the woman concerned has certainly experienced a morbidity benefit. However some researchers are concerned that many small, asymptomatic cancers identified through breast screening are indolent—cancers that would never otherwise have come to the attention of the woman. If this is so, breast-conserving treatment cannot be counted as a benefit, since no treatment was necessary. This problem of unnecessary diagnosis and management of nonprogressive cancers produces the overdiagnosis in breast screening programs; there is little consensus on how common it is. Overdiagnosis is discussed in more detail later in this chapter. In addition, several writers have expressed concern that screening has led to an increase, rather than a decrease, in mastectomy rates, due to the screen-detection of multifocal noninvasive disease that confers an increased risk of developing invasive breast cancer and is unsuitable for localized treatments. This remains controversial.

Psychological benefits

Since the majority of women are not destined to develop breast cancer, most women will receive a negative screen. While some argue that the reassurance of a negative screen can justifiably be counted as a benefit of screening, others disagree. Those who object give several reasons, including that in some cases the screening result will be wrong (a false-negative), so screening may sometimes deliver false reassurance. More generally, though, since it has been consistently shown that both the fear of breast cancer death and the expectation of mortality benefit from screening are inflated relative to what the evidence would support, it is argued that a woman’s subjectively experienced reassurance from a negative screen may be considerably inflated relative to our best estimates of her objective risk of developing breast cancer. This distorted perception of risk may have at least in part arisen from the communication campaigns of public health communication about breast screening. If this is true, without denying women’s subjective experience of reassurance, we should question the justifiability of including it as a benefit of screening. In addition, a wrong may be done to women if they are implicitly or explicitly misled them about the degree to which they are at risk and the degree to which participating in screening may prevent their death.

Does breast screening offer corporate benefits?

Many people consider that a population’s benefits for cancer screening are accrued only as aggregative benefits: the sum of benefits experienced by (a few) individuals as a result of participating in screening. Others describe several corporate benefits, added benefits that accrue to an entire community as a result of breast screening policies and practices. First, screening promotion campaigns have arguably improved public awareness and knowledge about breast cancer and, as noted earlier, this familiarity with disease may facilitate earlier presentation among women with symptomatic breast disease. Second, operating a breast screening program within a population may generate a sense that society cares about women, and is willing to support them and provide them with services. (This is considered in more detail below.) Finally, although it is impossible to assert a causal link, the introduction of breast screening is widely considered to have catalyzed better breast cancer management, facilitating an improvement in the coordination and operation of breast cancer treatment through better experience, training and monitoring of medical specialists, and the introduction of multidisciplinary team care. This has meant better outcomes and experiences for all women with breast cancer. Note, however, that these latter benefits have, to a large extent, already been delivered and are likely to continue, whatever happens to screening. Thus they seem relevant for an evaluation of past screening programs, but arguably are not relevant to our assessment of how screening should occur in future. This is in contrast, for example, to herd immunity, the corporate benefit of vaccination programs, which depends entirely on their continuing operation.

Summary: benefits

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Breast screening delivers breast cancer–specific mortality benefits and may deliver all-cause mortality benefits.
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Breast screening may deliver morbidity benefits (less aggressive treatments but possibly some unnecessary treatments).
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Consumer reassurance may or may not be a legitimate benefit for many women who participate in screening.
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Introduction of breast screening has stimulated additional, population-wide benefits (eg, improved management) but this may not be a pertinent justification for future screening programs.

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