Cancer prevention in people experiencing homelessness: ethical considerations and experiences from the CANCERLESS project.

The incidence of cancer in Europe has been increasing in recent years. Despite this, cancer prevention has remained a low priority in health policies. Cancer is one of the main causes of mortality among people experiencing homelessness, who continue to have difficulties accessing prevention programs. A strategy that has been tested to favor cancer prevention is the health navigator figure. The objective of CANCERLESS project is to implement this model among populations experiencing homelessness in four European countries to foster the prevention and early detection of cancer. In this perspective, a presentation of CANCERLESS project is made, and its ethical aspects are discussed according to the ethics of public health, the ethics of care, solidarity, relational autonomy, and the social recognition of the virtue of just generosity. The ethical foundations of CANCERLESS project are rooted in social justice and in equity in access to health systems in general and cancer screening programs in particular. The ethics of public health guided by utilitarianism are insufficient in serving the interests of the most disadvantaged groups of the population. Hence, it is necessary to resort to relational bioethics that includes the ethics of care and solidarity and that recognizes the moral identity of socially excluded persons, reaffirming their position of equality in society. Relational autonomy therefore provides a broader conception by including the influence of living conditions in decisions. For this reason, the CANCERLESS project opts for a dialogue with those affected to incorporate their preferences and values into decisions about cancer prevention.

Breast cancer screening in sub-Saharan Africa: a systematic review and ethical appraisal.

BACKGROUND: The aim of this systematic review was to evaluate the evidence and clinical outcomes of screening interventions and implementation trials in sub-Saharan Africa (SSA) and also appraise some ethical issues related to screening in the region through quantitative and qualitative narrative synthesis of the literature. METHODS: We searched Pubmed, OvidMEDLINE, Embase, and Web of Science to identify studies published on breast cancer screening interventions and outcomes in SSA. Descriptive statistics were used to summarize the frequency and proportions of extracted variables, and narrative syntheses was used to evaluate the clinical outcomes of the different screening modalities. The mixed methods appraisal tool was used to assess the quality of studies included in the review. RESULTS: Fifteen studies were included, which consisted of 72,572 women in ten countries in SSA. 63% (8/15) of the included publications evaluated Clinical Breast Examination (CBE), 47% (7/15) evaluated mammography and 7% (1/15) evaluated ultrasound screening. The cancer detection rate was < 1/1000 to 3.3/1000 and 3.3/100 to 56/1000 for CBE and mammography screening respectively. There was a lot of heterogeneity in CBE methods, target age for screening and no clear documentation of screening interval. Cost-effective analyses showed that CBE screening linked to comprehensive cancer care is most cost effective. There was limited discussion of the ethics of screening, including the possible harms of screening in the absence of linkage to care. The gap between conducting good screening program and the appropriate follow-up with diagnosis and treatment remains one of the major challenges of screening in SSA. DISCUSSION: There is insufficient real-world data to support the systematic implementation of national breast cancer screening in SSA. Further research is needed to answer important questions about screening, and national and international partnerships are needed to ensure that appropriate diagnostic and treatment modalities are available to patients who screen positive.

Assessment of Clinician Decision-making on Cancer Screening Cessation in Older Adults With Limited Life Expectancy.

Importance: Despite clinical practice guidelines recommending against routine cancer screening in older adults with limited life expectancy, older adults are still frequently screened for breast, colorectal, and prostate cancers. Objective: To examine primary care clinicians' decision-making on stopping breast, colorectal, or prostate cancer screening in older adults with limited life expectancy. Design, Setting, and Participants: In qualitative interviews coupled with medical record-stimulated recall, clinicians from 17 academic and community clinics affiliated with a large health system were asked how they came to specific cancer screening decisions in 2 or 3 of their older patients with less than 10-year of estimated life expectancy, including patients with and without recent screening. Patients were surveyed by telephone. Data collection occurred between October 2018 and May 2019. Main Outcomes and Measures: Clinician interviews were audio-recorded and transcribed verbatim. Transcripts were analyzed with qualitative content analysis to identify major themes. Patient surveys assessed perception of cancer screening decisions, importance of clinician recommendation, and willingness to stop screening. Results: Twenty-five primary care clinicians (mean [SD] age, 47.1 [9.7] years; 14 female [56%]) discussed 53 patients during medical record-stimulated recall, ranging from 2 to 3 patients per clinician; 46 patients and 1 caregiver (mean [SD] age 74.9 [5.4]; 31 female [66%]) participated in the survey. Clinician interviews revealed 5 major themes: (1) cancer screening decisions were not always conscious, deliberate decisions; (2) electronic medical record alerts were connected with less deliberate decision-making; (3) cancer screening was not binary and clinicians often considered other options to scale back screening without actually stopping; (4) in addition to patient characteristics, clinicians were influenced by patient request and anecdotal experiences; and (5) influences outside of the primary care clinician-patient dyad were important, such as from specialists and patients' family or friends. Patient surveys asked approximately 64 cancer screening decisions of 47 patients. Patients did not recall approximately half (31 of 64) of their cancer screening decisions. Among those with recent screening, the mean score for willingness to stop screening was 3.2 (95% CI 2.5-3.9) on a 5-point Likert scale (with 1 indicating "extremely unlikely" and 5 indicating "extremely likely"). In most screening decisions that involved specialists (13 of 16), patients valued specialists' recommendations over those of primary care clinicians. Conclusions and Relevance: Cancer screening decision-making is complex. Study findings suggest that strategies that facilitate more deliberate decision-making may be important in cancer screening of older adults with limited life expectancy.

Six Tips for Giving Good Health Care to Anyone With a Cervix.

Cervical cancer is most frequently diagnosed in patients ages 35 to 44, but risk persists as individuals age. Among patients who are regularly screened via the Pap test, cancer is rare and death rates have dropped dramatically in the United States. Nevertheless, access to regular screening can be difficult for transgender men (individuals assigned female at birth but with a male gender identity) due to misinformation, discomfort scheduling appointments, fear of being mistreated or of refused services, lack of insurance, and clinicians' lack of knowledge. This narrative explores 6 barriers to cervical cancer screening for transgender men and offers recommendations for eliminating cervical cancer inequality.

The potential impact of the Affordable Care Act and Medicaid expansion on reducing colorectal cancer screening disparities in African American males.

Few investigations have explored the potential impact of the Affordable Care Act on health disparity outcomes in states that chose to forgo Medicaid expansion. Filling this evidence gap is pressing as Congress grapples with controversial healthcare legislation that could phase out Medicaid expansion. Colorectal cancer (CRC) is a commonly diagnosed, preventable cancer in the US that disproportionately burdens African American men and has substantial potential to be impacted by improved healthcare insurance coverage. Our objective was to estimate the impact of the Affordable Care Act (increasing insurance through health exchanges alone or with Medicaid expansion) on colorectal cancer outcomes and economic costs among African American and White males in North Carolina (NC), a state that did not expand Medicaid. We used an individual-based simulation model to estimate the impact of ACA (increasing insurance through health exchanges alone or with Medicaid expansion) on three CRC outcomes (screening, stage-specific incidence, and deaths) and economic costs among African American and White males in NC who were age-eligible for screening (between ages 50 and 75) during the study period, years of 2013-2023. Health exchanges and Medicaid expansion improved simulated CRC outcomes overall, though the impact was more substantial among AAs. Relative to health exchanges alone, Medicaid expansion would prevent between 7.1 to 25.5 CRC cases and 4.1 to 16.4 per 100,000 CRC cases among AA and White males, respectively. Our findings suggest policies that expanding affordable, quality healthcare coverage could have a demonstrable, cost-saving impact while reducing cancer disparities.

Epistemic risks in cancer screening: Implications for ethics and policy.

Cancer screening is the subject of much debate; while screening has the potential to save lives by identifying and treating cancers in early stages, it is also the case that not all cancers cause symptoms, and the diagnosis of these cancers can lead to unnecessary treatments and subsequent side-effects and complications. This paper explores the relationships between epistemic risks in cancer diagnosis and screening, the social organization of medical research and practice, and policy making; it does this by examining 2018 recommendations by the United States Preventative Services Task Force that patients make individualized, autonomy-based decisions about cancer screening on the basis of discussions with their physicians. While the paper focuses on prostate cancer screening, the issues that it raises are relevant to other cancer screening programs, especially breast cancer. The paper argues that prostate cancer screening-and, more generally, the process of risk assessment for prostate cancer-is pervaded by epistemic risks that reflect value judgments and that the pervasiveness of these epistemic risks creates significant and under-explored difficulties for physician-patient communication and the achievement of autonomous patient decision making.

Who should access germline genome sequencing? A mixed methods study of patient views.

Implementation of any new medical test, including germline genome sequencing (GS) to inform cancer risk, should take place only when a test is effective, ethically justifiable and acceptable to a population. Little empirical evidence exists on patient views regarding GS for cancer risk. The aim of this study was to elicit opinions on who should be offered GS and who should pay for it. Participants with a probable genetic basis for their cancer (n = 335) and blood relatives (n = 199) were recruited to undergo GS and invited to complete questionnaires at baseline. A subset (n = 40) also participated in qualitative interviews about their views regarding access to GS to detect cancer risk. Our response rate was 92% for questionnaires and 100% for interviews. Participants expressed high enthusiasm overall for access to GS for those with a family history of cancer and anyone who requested testing, but enthusiasm was lower for universal access, if opting out was possible and finances not an issue. Rationales for these views reflected maximising the sound use of resources. Challenges to introducing community screening via GS to limit cancer burden were raised, including the current limits of science and individual ability to cope with uncertain results. Participants undergoing GS supported cancer risk testing for those with a family history of cancer but were concerned about the challenges of designing and implementing a population-based GS cancer-screening program.

Regarding the Yin and Yang of Precision Cancer- Screening and Treatment: Are We Creating a Neglected Majority?

In this commentary, we submit that the current emphasis of precision cancer screening and treatment (PCST) has been to provide and interpret the implications of "positive" screening results for those deemed to be at greatest risk for cancer or most likely to benefit from targeted treatments. This is an important, but proportionately small target group, regardless of the cancer context. Overlooked by this focus is the larger majority of those screened who receive "negative" results. We contend that for optimal dissemination of PCST, the complement of positive and negative results be viewed as an inseparable yin-yang duality with the needs of those who receive negative screening results viewed as important as those deemed to be at highest risk or derive targeted treatment benefit. We describe three areas where communication of negative PCST results warrant particular attention and research consideration: population-based family history screening, germline testing for hereditary cancer syndromes, and tumor testing for targeted cancer treatment decision-making. Without thoughtful consideration of the potential for negative results to have psychological and behavioral influences, there is a potential to create a "neglected majority". This majority may be inclined to misinterpret results, disseminate inaccurate information to family, dismiss the credibility of results, or become disillusioned with existing medical treatments.

Lethal privacy: Quantifying life years lost if the right to informational self-determination guides genetic screening for Lynch syndrome.

Genetic relatives of hereditary colorectal cancer patients with Lynch syndrome (LS) are at risk of cancer. Testing both colorectal cancer patients and relatives of mutation carriers for LS allows targeted prevention. However, this could mean disclosing sensitive health data to family members. In light of potential trade-offs between cost-effectiveness and patient privacy, this study investigates the implications of increasing test uptake in Germany. Out of 22 screening strategies for LS, the non-dominated and current German strategies were assessed from the perspective of the statutory health insurance. Life years gained by increased prevention were estimated with Markov models. The effects and implications of different test uptake rates in index patients and their relatives were investigated by scenario analysis. Privacy limitations could yield health gains of up to 2500 undiscounted life years for first-degree relatives of index patients and substantially improve cost-effectiveness. However, this approach may contradict the right to informational self-determination. This study demonstrates the effect higher LS test uptakes could have on the lives and rights of colorectal cancer patients and their relatives. It shows potential conflicts between the efficient use of health care resources on the one hand and reasonable consideration of patient autonomy on the other.

[Ethical considerations in the evolution of organised cancer screening programs]. / Apport de la réflexion éthique dans l'évolution des programmes de dépistage organisé des cancers.

Ethical considerations in the evolution of organised cancer screening programs Since 2009, the French National Cancer Institute has set up a working group on the ethics of screening programs for breast, colon and cervical cancer. Collective and individual interest, equity and respect for autonomy are the values addressed in the respective reports. Ethical analysis has highlighted issues that are specific to each programme: the importance of the information provided by health professionals in a context of uncertainty for breast cancer screening; health professionals as a relay of information, access to test and support in the colorectal cancer screening process and, for cervical cancer screening, the implementation of an organisation adapted to women populations concerned. A public health policy whose efficiency depends on the public's adhesion of screening proposals must respect a fundamental ethical principle, namely the assessment of the benefit/risk balance.

Apport de la réflexion éthique dans l'évolution des programmes de dépistage organisé des cancers Depuis 2009, l'Institut national du cancer a mis en place un groupe de réflexion sur l'éthique des programmes de dépistage des cancers du sein, du côlon et du col de l'utérus. L'intérêt collectif et individuel, l'équité et le respect de l'autonomie sont les valeurs abordées dans les rapports respectifs. L'analyse éthique a fait émerger des enjeux spécifiques à chaque programme : l'importance de l'information délivrée par les professionnels de santé dans un contexte d'incertitude, pour le dépistage du cancer du sein ; les professionnels de santé comme relais d'information, d'accès au test et d'accompagnement dans le parcours de dépistage du cancer colorectal et pour le dépistage du cancer du col de l'utérus, la mise en place d'une organisation adaptée aux populations de femmes concernées. Une politique de santé publique dont l'efficience dépend de l'adhésion de la population aux propositions de dépistage doit respecter un principe éthique fondamental qui est l'évaluation de la balance bénéfices-risques.

The detection of interval colorectal cancers following screening by fecal immunochemical test may predict worse outcomes and prompt ethical concerns: a 6-year population-based cohort study in a full district.

The rates of colorectal cancer (CRC) interval surveyed in screen-detected patients using a fecal immunochemical test (FIT) are not negligible. The aim of this study was to assess the effect of interval cancer on outcomes compared with a population with cancer diagnosed after a positive test result. All patients between 50 and 71 years of age, who were residents of the Mantua district, affected by CRC and operated on from 2005 to 2010 were reviewed. Other than patient-related, disease-related, and treatment-related factors and tumor location, this population was differentiated as either participating or not to screening and then into populations developing interval cancer after a negative FIT result. Mortality was investigated by univariate analysis and by overall survival rates. The mean age of the 975 patients enrolled was 62 years (61.7% males). Most patients (n=575, 59%) were not screen detected, and 400 (41%) were screen detected. Fifty-six (5.7%) patients in the latter group, representing 14% of the participants, developed interval cancer after a negative FIT result. Their cancer was mostly localized in the right colon (41.1%) instead of the left colon and rectum (P=0.02). They also showed higher stages (P=0.001), a moderate degree of differentiation (P=0.001), and overall higher mortality rates than patients with cancer diagnosed after a positive test result (P=0.001). The effect of interval CRC after screening with FIT resulted in worse outcomes compared with the FIT-positive group. With such findings, patients who had negative results for FIT should be informed of the risk of developing cancer within the rounds of screening to independently gain educational skills in the area of health prevention.

Low participation in organized colorectal cancer screening in France: underlying ethical issues.

International studies have shown a significant reduction in colorectal cancer (CRC) mortality following the implementation of organized screening programs, given a sufficient participation rate and adequate follow-up. The French national CRC screening program has been generalized since 2008 and targets 18 million men and women aged 50-74 years. Despite broad recommendations, the participation rate remains low (29.8%), questioning the efficiency of the program. A panel of experts was appointed by the French National Cancer Institute to critically examine the place of autonomy and efficiency in CRC screening and propose recommendations. In this paper, we explore the ethical significance of a public health intervention that falls short of its objectives owing to low take-up by the population targeted. First, we analyze the reasons for the low CRC screening participation. Second, we examine the models that can be proposed for public health actions, reconciling respect for the individual and the collective good. Our expert panel explored possible ways to enhance take-up of CRC screening within the bounds of individual autonomy, adapting awareness campaigns, and new educational approaches that take into account knowledge and analysis of sociocultural hurdles. Although public health actions must be universal, target actions should nonetheless be developed for nonparticipating population subgroups.

Analysing the ethics of breast cancer overdiagnosis: a pathogenic vulnerability.

Breast cancer screening aims to help women by early identification and treatment of cancers that might otherwise be life-threatening. However, breast cancer screening also leads to the detection of some cancers that, if left undetected and untreated, would not have damaged the health of the women concerned. At the time of diagnosis, harmless cancers cannot be identified as non-threatening, therefore women are offered invasive breast cancer treatment. This phenomenon of identifying (and treating) non-harmful cancers is called overdiagnosis. Overdiagnosis is morally problematic as it leads to overall patient harm rather than benefit. Further, breast cancer screening is offered in a context that exaggerates cancer risk and screening benefit, minimises risk of harm and impedes informed choice. These factors combine to create pathogenic vulnerability. That is, breast cancer screening exacerbates rather than reduces women's vulnerability and undermines women's agency. This paper provides an original way of conceptualising agency-supporting responses to the harms of breast cancer overdiagnosis through application of the concept of pathogenic vulnerability.

[Participation to organized screening programs: Individual and collective stakes]. / Participation aux programmes organisés de dépistage des cancers : enjeu individuel, enjeu collectif.

The evaluation of the risk-benefit balance in public health is an ethical commitment, based on the imperative of not harming people. Screening is a probabilistic approach, which, in order to serve the needs of a few, involves the largest number to share the potential harmful effects. Improvement of scientific knowledge and opening of the societal debate modified the relation between collective and individual stakes over time. This article traces the evolution of the discourse surrounding cancer screening, particularly following the controversy surrounding breast cancer screening. Within the framework of a health policy, screening leads in the first place to a collective benefit and second, to an individual benefit. It describes how, within the French context, the debate has induced a complete re-examination of the modalities of information and consent leading to a shift from the promotion of screening to more balanced information on benefits and risks, so that people can decide whether to participate in a more informed way.

[Ethics of organized cancer screening in France] / Éthique et dépistages organisés des cancers en France.

Cancer screening has been among the priorities of the French Cancer Plans since 2003. However, participation in screening programs remains below expectations. The predominance of the value of autonomy in today's society may compromise the legitimacy of a public health action if it does not gain the adhesion of individuals. The Group of Reflection on the Ethics of Screening (GRED) set up by the French National Cancer Institute has brought together experts from different disciplines around this issue. The aim of the present article is to summarize the work of the group, which successively focused on breast and colorectal cancer screening programs, followed by reflection on the implementation of organized cervical cancer screening. Information and health education appear to be key levers to enable individuals to understand the collective interest of public health policies and thus to be able to adhere to the proposed actions in an informed manner. This should be made possible by providing complete and high quality information, addressing the limits of each screening including benefits and risks. Valuing the collective dimension of public health, which calls for solidarity, must make it possible to raise awareness of the proper use of public services.

Ethical, Legal, and Regulatory Issues for the Implementation of Omics-Based Risk Prediction of Women's Cancer: Points to Consider.

BACKGROUND AND OBJECTIVE: Advances in omics open new opportunities for cancer risk prediction and risk-based screening interventions. However, implementation of risk prediction in clinical practice may impact the ethical, legal, and regulatory aspects of current cancer screening programs. In order to support decision-making, we analyzed the ethical, legal, and regulatory issues and developed a set of Points to Consider to support management of these issues. METHODS: We analyzed the legal and policy frameworks applicable to breast and cervical cancer screening programs in 7 European countries. We identified the most relevant issues to be considered, and we developed considerations for their management, based on the literature, the legal and policy frameworks, and our experience with similar issues. RESULTS: The considerations focus on five topics: (A) health services planning, (B) information and invitation, (C) consent and data/sample collection, (D) risk calculation and communication of results, and (E) storage of data and residual samples. CONCLUSION: Current frameworks might not be adequate to implement a risk prediction approach using omics factors due to the different characteristics of such approaches.