Online research in philosophy

Objectives: The objectives of the study were (1) to assess similarities and differences between breast cancer patients and their husbands in terms of doctor-patient/spouse relationships and shared decision making; and (2) to investigate the association between breast cancer patients and husbands in terms of preference of type of doctor, doctor-patient relationship, and shared decision making regarding medical treatment. Method: Fifty-seven women with breast cancer, and their husbands, completed questionnaires measuring doctor-patient/spouse relationships (paternalism, autonomy), and decision making regarding medical treatment. Results: (...) Patients believe they have a key role in the medical decision-making process (93%) and that the participation of their husbands, and their agreement with the decision, is important (84% and 89%, respectively). Both breast cancer patients and their husbands prefer a shared decision-making process to paternalistic or autonomy-based approaches. Conclusion: In contrast to legal and bioethical approaches, which focus on the patient as the primary decision maker, this study reflects a practical recognition of the role of the breast cancer patient's husband in the decision-making process. It also reflects a relational rather than an individualistic perception of patient autonomy. (shrink)

In this paper, I explore the meaning of bodily integrity in disfiguring breast cancer. Bodily integrity is a normative principle precisely because it does not simply refer to actual physical or functional intactness. It rather indicates what should be regarded and respected as inviolable in vulnerable and damageable bodies. I will argue that this normative inviolability or wholeness can be based upon a person's embodied experience of wholeness. This phenomenological stance differs from the liberal view that identifies respect for integrity (...) with respect for autonomy (resulting in an invalidation of bodily integrity's proper normative meaning), as well as from the view that bodily integrity is based upon ideologies of wholeness (which runs the risk of being disadvantageous to women). I propose that bodily integrity involves a process of identification between the experience of one's body as “Leib” and the experience of one's body as “Körper.” If identification fails or is not possible, one's integrity is threatened. This idea of bodily integrity can support breast cancer patients and survivors in making decisions about possible corrective interventions. To implement this idea in oncology care, empirical-phenomenological research needs to establish how breast cancer patients express their embodied self-experiences. (shrink)

To write about the disease of breast cancer from both scientific and spiritual perspectives is to reflect upon our genetic and spiritual ancestry. We examine the issues involved in breast cancer at the intersections of spirituality, technology, and science, using the fundamental thing we know about being human: our bodies. Our goal in this essay is to offer close readings of women's spiritual and bodily journeys through the disease of breast cancer. We have discovered that both illness and health come (...) within the stories of particular people and particular disciplines. And to learn more about breast cancer, both scientific and spiritual aspects, one must be attentive to such particularities. Medicine and religion are bodily experiences, and being a body-self is what it means to be human. (shrink)

We present a new framework for combining logic with probability, and demonstrate the application of this framework to breast cancer prognosis. Background knowledge concerning breast cancer prognosis is represented using logical arguments. This background knowledge and a database are used to build a Bayesian net that captures the probabilistic relationships amongst the variables. Causal hypotheses gleaned from the Bayesian net in turn generate new arguments. The Bayesian net can be queried to help decide when one argument attacks another. The Bayesian (...) net is used to perform the prognosis, while the argumentation framework is used to provide a qualitative explanation of the prognosis. (shrink)

Background: An effectiveness assessment on ASCT in locally advanced and metastatic breast cancer identified serious ethical issues associated with this intervention. Our objective was to systematically review these aspects by means of a literature analysis. Methods: We chose the reflexive Socratic approach as the review method using Hofmann's question list, conducted a comprehensive literature search in biomedical, psychological and ethics bibliographic databases and screened the resulting hits in a 2-step selection process. Relevant arguments were assembled from the included articles, and (...) were assessed and assigned to the question list. Hofmann's questions were addressed by synthesizing these arguments. Results: Of the identified 879 documents 102 included arguments related to one or more questions from Hofmann's question list. The most important ethical issues were the implementation of ASCT in clinical practice on the basis of phase-II trials in the 1990s and the publication of falsified data in the first randomized controlled trials (Bezwoda fraud), which caused significant negative effects on recruiting patients for further clinical trials and the doctor-patient relationship. Recent meta-analyses report a marginal effect in prolonging disease-free survival, accompanied by severe harms, including death. ASCT in breast cancer remains a stigmatized technology. Reported health-related-quality-of-life data are often at high risk of bias in favor of the survivors. Furthermore little attention has been paid to those patients who were dying. Conclusions: The questions were addressed in different degrees of completeness. All arguments were assignable to the questions. The central ethical dimensions of ASCT could be discussed by reviewing the published literature. (shrink)

This article is an exploration of how the concept of relational autonomy might be applied in practice. The discussion uses the example of breast cancer nursing as a lens through which to consider how a view of autonomy as relational might affect the ways in which practitioners work with their clients.

In line with some recent studies that emphasize the importance of embodied meanings in social interaction and face-to-face communication, this study recognizes the significance of the body in human meaning-making processes and contributes to the emerging studies that explore the relation of the body, self, and social interaction. Unlike studies that analyze the body as a symbol or text disconnected from the actual body (i.e., a representation), this study does not separate appearance from the body. Rather, this research explores embodied (...) appearance and shows how a nonconforming appearance might highlight the body's presence in interaction, making it a focal point of attention in contrast to the taken-for-grantedness of our bodies in everyday life. I examine the reported experiences of some breast cancer survivors to find the implications of changes in physical appearance due to radiation, chemotherapy, or surgery, for survivors and their interactions with others. (shrink)

Health technology assessment (HTA) was developed in the 1970s and 1980s to facilitate decision making on the desirability of new biomedical technologies. Since then, many of the standard tools and methods of HTA have been criticized for their implicit normativity. At the same time research into the character of technology in practice has motivated philosophers, sociologists and anthropologists to criticize the traditional view of technology as a neutral instrument designed to perform a specific function. Such research suggests that the tools (...) and methods of more traditional forms of HTA are often inspired by an ‘instrumentalist’ conception of technology that does not fit the way technology actually works. This paper explores this hypothesis for a specific case: the assessments and deliberations leading to the introduction of breast cancer screening in the Netherlands. After reconstructing this history of HTA ‘in the making’ the stepwise model of HTA that emerged during the process is discussed. This model was rooted indeed in an instrumentalist conception of technology. However, a more detailed reconstruction of several episodes from this history reveals how the actors already experienced the inadequacy of some of the instrumentalist presuppositions. The historical case thus shows how an instrumentalist conception of technology may result in implicit normative effects. The paper concludes that an instrumentalist view of technology is not a good starting point for HTA and briefly suggests how the fit between HTA methods and the actual character of technology in practice might be improved. (shrink)

This paper illustrates a role that bioethics should play in developing and criticizing protocols for breast cancer genetic screening. It demonstrates how a critical bioethics, using approaches and reflecting concerns of contemporary philosophy of science and science studies, may critically interrogate the normative and conceptual schemes within which ethical considerations about such screening protocols are framed. By exploring various factors that influence the development of such protocols, including politics, cultural norms, and conceptions of disease, this paper and the critical bioethics' (...) approach it endorses illuminate and critically assess some of the competing worldviews informing protocol development. One of the frequently neglected worldviews in traditional bioethics' treatment of protocols concerning breast care is constituted by women's own views of their breasts and breast cancer, both within the technologically-oriented social practice of American medicine and in light of the social construction of their breasted experience in American society. This paper attempts to redress and critically assess this neglect on the part of traditional bioethics. Finally, in contrast to traditional bioethics, critical bioethics critically interrogates its own normative and conceptual commitments. In this final capacity, a critical bioethics' approach makes a valuable contribution to the evolution of bioethics. Keywords: bioethics, breast cancer genetic screening, conceptions of disease, conceptual frameworks CiteULike Connotea Del.icio.us What's this? (shrink)

The surgical treatment of breast cancer has changed in recent years. Analysis of the research that led to these changes yields apparently good arguments for all of the following: (1) The research yielded very great benefits for women. (2) There was no other way of obtaining these benefits. (3) This research violated the fundamental rights of the women who were research subjects. This sets a problem for ethics at many levels.

PURPOSE/OBJECTIVES: To examine differences in nursing care received by patients with breast cancer enrolled in clinical trials and those not enrolled in clinical trials. DESIGN: Retrospective review of clinic charts. SETTING: Oncology outpatient department of a tertiary-care hospital. SAMPLE: 90 women with early stage breast cancer. The mean age of the women was 53 years. More than half of the women (51 of 90) were treated in a clinical trial. METHODS: Retrospective chart review of all the nurse-patient clinic encounters for (...) a six-month period from date of cancer diagnosis. The content of each encounter was coded using a modified version of the Nursing Action Classification System. MAIN RESEARCH VARIABLES: Nursing interventions (i.e., assessment, medical scheduling, psychosocial scheduling, reassurance, and teaching) and phone calls. FINDINGS: Women enrolled in clinical trials had more phone interactions with nursing staff (p = 0.003) and received teaching (p < 0.001) and reassurance (p = 0.005) from nursing staff more often than women not enrolled in clinical trials. Controlling for age and stage of disease, teaching (p < 0.001), and reassurance (p = 0.10) were the primary differences in nursing care between the patients enrolled in clinical trials and those not enrolled. CONCLUSION: Differences in nursing care received exist between patients with breast cancer enrolled in clinical trials and those not enrolled. IMPLICATIONS FOR NURSING PRACTICE: Both teaching and reassurance are important components of caring for patients with cancer and are associated with treatment compliance. If the results of this study are confirmed, measures must be employed to ensure that all patients receive optimal care. (shrink)

The ideal goal of a screening program for breast cancer is to detect the disease at a stage when it is still curable by a simple lumpectomy. This goal would be possible if the tumor had an early latent period before it was vascularized. However, even if there existed a harmless screening examination that was sensitive enough to discover the cancer at this stage the benefit to be gained from a screening program would be highly dependent on the time the (...) tumor spends in the latent stage as well as on the chance of false negatives at the examination. Calculations derived from a mathematical model suggest a variety of theoretically possible situations including: (1) For certain cancers screening every three years would offer almost as much benefit as screening every year; (2) A large increase in the sensitivity of a screening examination does not necessarily lead to a large increase in the benefit of a screening program; (3) For certain cancers the benefit of screening might remain low no matter how sensitive the examination used. (shrink)

We present a new framework for combining logic with probability, and demonstrate the application of this framework to breast cancer prognosis. Background knowledge concerning breast cancer prognosis is represented using logical arguments. This background knowledge and a database are used to build a Bayesian net that captures the probabilistic relationships amongst the variables. Causal hypotheses gleaned from the Bayesian net in turn generate new arguments. The Bayesian net can be queried to help decide when one argument attacks another. The Bayesian (...) net is used to perform the prognosis, while the argumentation framework is used to provide a qualitative explanation of the prognosis. (shrink)

Representations of breast cancer are examined in three popular women's periodicals targeting African American readers: Ebony, Essence, and Black Elegance. The researcher focuses specifically on representations that reflect certain ideas/ideals about the sharing and creating of information about the disease and related issues, such as health care and body image. Magazine selections are analyzed and critiqued according to the epistemological principles outlined by Patricia Hill Collins in Black Feminist Thought. The author calls for further research into how and why particular (...) social and cultural groups consume information about health and illness in particular ways. (shrink)

This article presents the results of a study that investigates the way in which carriers of a mutation on the BRCA1 or the BRCA2 gene, associated with a high risk of breast and ovarian cancer, make their reproductive decisions. Using semi-structured interviews, the study explored the way in which these persons reflected on the acceptability of taking the risk of transmitting this mutation to the next generation, the arguments they used in favor or against taking that risk, and in the (...) light of these arguments, their opinion on the acceptability of preimplantation genetic diagnosis (PGD) as a reproductive option. The findings suggest that when carriers are planning to have a(nother) child, they are mainly concerned by the risk of transmitting ‘much more than a gene’: essentially painful experiences not only with respect to health, such as undergoing cancer surveillance or combatting one’s own illness, but also with regards to family life, such as witnessing the illness and death of a close relative, encountering difficulties in finding a partner or reconsidering one’s plans to have a family. As for opinions concerning the acceptability of PGD as a reproductive option, opinions about personal recourse were varied but all expressed the understanding that PGD should be made available to those persons who consider it their best option. (shrink)

Cancer treatment decisions should be based on all available evidence. But this evidence is complex and varied: it includes not only the patient’s symptoms and expert knowledge of the relevant causal processes, but also clinical databases relating to past patients, databases of observations made at the molecular level, and evidence encapsulated in scientific papers and medical informatics systems. Objective Bayesian nets offer a principled path to knowledge integration, and we show in this chapter how they can be applied to integrate (...) various kinds of evidence in the cancer domain. This is important from the systems biology perspective, which needs to integrate data that concern different levels of analysis, and is also important from the point of view of medical informatics. (shrink)

Cancer treatment decisions should be based on all available evidence. But this evidence is complex and varied: it includes not only the patient’s symptoms and expert knowledge of the relevant causal processes, but also clinical databases relating to past patients, databases of observations made at the molecular level, and evidence encapsulated in scientific papers and medical informatics systems. Objective Bayesian nets offer a principled path to knowledge integration, and we show in this chapter how they can be applied to integrate (...) various kinds of evidence in the cancer domain. This is important from the systems biology perspective, which needs to integrate data that concern different levels of analysis, and is also important from the point of view of medical informatics. (shrink)

In accordance with the critical women’s health literature recounting the ways that women are encouraged to submit themselves to various sorts of health “imperatives”, I investigate the messages tacitly conveyed to women in “campaigns for the cure” and breast cancer awareness efforts, which, I argue, overemphasizes a “positive attitude”, healthy lifestyle, and cure rather than prevention of this life-threatening disease. I challenge that the message of hope pervading breast cancer discourse silences the despair felt by many women, furthers a tacit (...) blaming for disease infliction via a rhetoric of personal responsibility, underemphasizes other cogent health determinants like environmental toxicity, and undermines legitimate critiques of current biomedical practices like widespread mammography. While finding a cure for breast cancer is a laudable and worthwhile healthcare goal that can understandably be shared by women’s health activists, corporate sponsors, and the medical community, this paper resists the current formation of campaigns for the cure and “pink ribbon activism” in general. (shrink)

The three claims put forward by Dr. Roger Poisson to rationalize his enrollment of ineligible subjects in clinical trials do not justify research fraud. None the less, certain lessons for the conduct of clinical research can be learned from the affair: experimental therapies should be made available to technically ineligible subjects when no effective therapy exists for their disease; further research must investigate the possible benefits of clinical-trial participation; broadly based, pragmatic trials must be regarded as the ideal model; and (...) each eligibility criterion in a clinical-trial protocol should be justified. (shrink)

For the last 50 years the dominant stance in experimental biology has been reductionism in general, and genetic reductionism in particular. Philosophers were the first to realize that the belief that the Mendelian genes were reduced to DNA molecules was questionable. Soon, experimental data confirmed these misgivings. The optimism of molecular biologists, fueled by early success in tackling relatively simple problems has now been tempered by the difficulties encountered when applying the same simple ideas to complex problems. We analyze three (...) examples taken from experimental data that illustrate the shortcomings of this sort of reductionism. In the first, alterations in the expression of a large number of genes coexist with normal phenotypes at supra-cellular levels of organization; in the second, the supposed intrinsic specificity of hormonal signals is negated; in the third, the notion that cancer is a cellular problem caused by mutated genes is challenged by data gathered both from the reductionist viewpoint and the alternative view proposing that carcinogenesis is development gone awry. As an alternative to reductionism, we propose that the organicist view is a good starting point from which to explore these phenomena. However, new theoretical concepts are needed to grapple with the apparent circular causality of complex biological phenomena. (shrink)

November 2009’s announcement of the USPSTF’s recommendations for screening for breast cancer raised a firestorm of objections. Chief among them were that the panel had insufficiently valued patients’ lives or allowed cost considerations to influence recommendations. The publicity about the recommendations, however, often either simplified the actual content of the recommendations or bypassed significant methodological issues, which a philosophical examination of both the science behind screening recommendations and their import reveals. In this article, I discuss two of the leading ethical (...) considerations at issue in screening recommendations: respect for patient autonomy and beneficence and then turn to the most significant methodological issues raised by cancer screening: the potential biases that may infect a trial of screening effectiveness, the problem of base rates in communicating risk, and the trade-offs involved in a judgment of screening effectiveness. These issues reach more broadly, into the use of "evidence-based" medicine generally, and have important implications for informed consent. (shrink)

Since the 1950''s effective control of conception has allowed modern men and women to differentiate procreational from recreational sexual exchange. What is considered highly erotic has differed widely through time and in various cultures. In the U.S. the female breast has come to mean far more than nurturing an infant. Sexuality symbolizes youth, attractiveness, desirability and as such is used for effective commercial marketing. The reality of cancer remains to be dealt with in health care at a physical level but (...) more is needed to assist the emotional adjustment of affected women and their partners. Brief sex therapy for sex symptoms is outlined. (shrink)

From the sixties on it has become clear how the human physical condition could be influenced by human behavior. Although hypothesis were lacking to understand these connections, nursing research especially proved how systematically introduced patient behavior during illness and hospitalization could induce better recovery results and better prognosis for the patient.Information andattitude proved to be crucial elements in these processes of improved patient expectations. It took less than two decades to get to the insights we have in 1994. Recent research (...) shows the interlocking mechanisms of nervous and endocrine systems with the immune system as significantly being influenced by behavior and especially psychic and or psychosocial stress.This special issue of Theoretical Medicine briefly describes the historical development with contributions on the most recent state of the scientific art. These developments are emphasized by discussion on the clinical reality of the (breast) cancer patient and recent findings on the complexity of the prevalence of cancer in epidemiology. An attempt is made to consider practical consequences of the actual knowledge if applied to patient care. (shrink)

In 2008 New Zealand's pharmaceutical management agency, PHARMAC, made its final decision on the funding of trastuzumab (Herceptin) for HER2-positive early stage breast cancer. PHARMAC declined to fund the 12-month Herceptin regimen requested by the drug's manufacturer, funding instead a 9-week treatment regimen. The decision was justified on the grounds that there was insufficient evidence of additional long-term health benefits from the longer treatment course, which, coupled with the high cost of the drug, did not make the 12-month regimen sufficiently (...) cost-effective. This paper examines the criticism of PHARMAC's decision that ultimately led to the government's decision to expand the health budget in order to fund the 12-month regimen. It defends PHARMAC's decision against the charge of unfairness, arguing that for high-cost drugs with limited proven effectiveness it is not unfair to deny funding on grounds of cost-effectiveness, since although some moral priority must be given to helping those with serious diseases like breast cancer, the capacity of such drugs to swamp health care budgets is itself a significant moral issue. It concludes that the decision to expand the health budget to pay for Herceptin exacerbates rather than solves the political and moral problems involved in prioritizing health care resources. (shrink)

Familial clustering of a disease is defined as the occurrence of the disease within some families in excess of what would be expected from the occurrence in the population. It has been demonstrated for several cancer types, ranging from rare cancers as the adenomatosis-coli-associated colon cancer or the Li-Fraumeni syndrome to more common cancers as breast cancer and colon cancer. Familial clustering, however, is merely an epidemiological pattern, and it does not tell whether genetic or environmental causes or both in (...) combination are responsible for the familial clustering. Familial clustering may be due to genetic predisposition to the disease, but exposure to environmental factors — shared by members of some families, but not by members of other families — may also cause familial clustering and hence mimic genetic inheritance in the study of nuclear families. Based on assumptions regarding the individual steps in the biological process starting with exposure to carcinogens and ending with death from disseminated cancer we suggest that genetic and environmental factors may both be involved in most of these steps. The present paper focuses on research methodologies necessary to discriminate between the effect of genes and family environment in the development of cancer. (shrink)

The aim of this paper is to assess the relevance of somatic evolution by natural selection to our understanding of cancer development. I do so in two steps. In the first part of the paper, I ask to what extent cancer cells meet the formal requirements for evolution by natural selection, relying on Godfrey-Smith’s (2009) framework of Darwinian populations. I argue that although they meet the minimal requirements for natural selection, cancer cells are not paradigmatic Darwinian populations. In the second (...) part of the paper, I examine the most important examples of adaptation in cancer cells. I argue that they are not significant accumulations of evolutionary changes, and that as a consequence natural selection plays a lesser role in their explanation. Their explanation, I argue, is best sought in the previously existing wiring of the healthy cells. (shrink)

Most people know precious little about the risks and benefits of participating in a clinical trial--a medical research study involving some innovative treatment for a medical problem. Yet millions of people each year participate anyway. Patients at Risk explains the reality: that our current system intentionally hides much of the information people need to make the right choice about whether to participate. Witness the following scenarios: -Hundreds of patients with colon cancer undergo a new form of keyhole surgery at leading (...) cancer centersnever -Tens of thousands of women at high risk of developing breast cancer are asked to participate in a major research study. They are told about the option of having both breasts surgically removed but not told about the option of taking a standard osteoporosis pill that might cut the risk of getting breast cancer by one-half or more. Patients at Risk written by two nationally prominent experts, is the first book to reveal the secrets that many in the research establishment have fought long and hard to keep from patients. It shows why options not commonly knownincluding getting a new treatment outside of a research studycan often be the best choice. It explains how patients can make good decisions even if there is only limited information about a treatments effect. And it does this through the eye-opening stories of what is happening daily to thousands of people. Day after day, we are learning how little we know about what really works. Headlines regularly announce that a previously unquestioned treatmenthormone replacement therapy, drugs such as Vioxx or Celebrexmay now be much riskier than we thought. The latest book in a surge of recent books criticizing the medical establishment (but the first to look at clinical trials specifically), Patients at Risk helps to empower patients to survive in a world of medical uncertainty, and makes positive recommendations for systemic reform. (shrink)

Policy-makers must sometimes choose between an alternative which has somewhat lower expected value for each person, but which will substantially improve the outcomes of the worst off, or an alternative which has somewhat higher expected value for each person, but which will leave those who end up worst off substantially less well off. The popular ex ante Pareto principle requires the choice of the alternative with higher expected utility for each. We argue that ex ante Pareto ought to be rejected (...) because it conflicts with the requirement that, when possible, one ought to decide as one would with full information. We apply our argument in an analysis of US policy on screening for breast cancer. (shrink)

: Decisions about funding health services are crucial to controlling costs in health care insurance plans, yet they encounter serious challenges from intellectual property protection—e.g., patents—of health care services. Using Myriad Genetics' commercial genetic susceptibility test for hereditary breast cancer (BRCA testing) in the context of the Canadian health insurance system as a case study, this paper applies concepts from social contract theory to help develop more just and rational approaches to health care decision making. Specifically, Daniels's and Sabin's "accountability (...) for reasonableness" is compared to broader notions of public consultation, demonstrating that expert assessments in specific decisions must be transparent and accountable and supplemented by public consultation. (shrink)

This paper will consider the right not to know in the context of psychiatric disorders. It will outline the arguments for and against acquiring knowledge about the results of genetic testing for conditions such as breast cancer and Huntington’s disease, and examine whether similar considerations apply to disclosing to clients the results of genetic testing for psychiatric disorders such as depression and Alzheimer’s disease. The right not to know will also be examined in the context of the diagnosis of psychiatric (...) disorders that are associated with stigma or for which there is no effective treatment. (shrink)

: In the shadowy world between philosophy of science and ethics lie the paired concepts of underdetermination and incommensurability. Typically, scientific evidence underdetermines the hypotheses tested in research studies, providing neither proof nor disproof. As a result, scientists must judge the weight of the evidence, and in doing so, bring scientific and extrascientific values to bear in their approaches to assessing and interpreting the evidence. When different scientists employ very different values, their views are said to be incommensurable. Less prominent (...) differences represent partial incommensurabilities. The definitions and analyses provided by McMullin and by Veatch and Stempsey lay the foundation for the description of partial incommensurabilities in the current practice of assessing and interpreting epidemiologic evidence. This practice is called "causal inference" and is undertaken for the purpose of making causal conclusions and public health recommendations from population-based studies of exposures and diseases. Following the work of Bayley and Longino, several suggestions are examined for dealing with the partial incommensurabilities found in the general practice of causal inference in contemporary epidemiology. Two specific examples illustrate these ideas: studies on the relationship between induced abortion and breast cancer and those on the relationship between moderate alcohol consumption and breast cancer. (shrink)

Medical error is a leading problem of health care in the United States. Each year, more patients die as a result of medical mistakes than are killed by motor vehicle accidents, breast cancer, or AIDS. While most government and regulatory efforts are directed toward reducing and preventing errors, the actions that should follow the injury or death of a patient are still hotly debated. According to Nancy Berlinger, conversations on patient safety are missing several important components: religious voices, traditions, and (...) models. In After Harm, Berlinger draws on sources in theology, ethics, religion, and culture to create a practical and comprehensive approach to addressing the needs of patients, families, and clinicians affected by medical error. She emphasizes the importance of acknowledging fallibility, telling the truth, confronting feelings of guilt and shame, and providing just compensation. After Harm adds important human dimensions to an issue that has profound consequences for patients and health care providers. (shrink)

I am lying on a small table in a tiny room, dizzy with nausea and apprehension. A young woman busies herself with the preparations of a plaster mold that will be used to position my arm and chest for the twenty five ‘shots’ of radiotherapy that I will undergo during the ensuing five weeks. I had called the hospital that morning to say that I was too sick to come for this appointment. I had better come, said a young man (...) from the department, because if I missed this appointment I would I might not get a new appointment in time start the treatments within the recommended time frame. So I am here, on the table. I mention the nausea to the technician. My apprehension at this moment is that I might become so dizzy as to somehow swirl out of control. The young woman gives me a mask to blunt the smell of the plaster. The procedure will take twenty-five minutes. I keep my mind focused on each breath and get through the ordeal breath by breath. She seems, in contrast to me, gloriously free of distress and worry, listening to the radio while she works. I envy her good fortune. As we finish up the procedure I take a chance and share my experience: I say that being a cancer patient can be tricky because you are sometimes utterly in the grip of the idea that the cancer will spread and you’ll die soon and in a very unpleasant way. After each round of chemo I was admitted to hospital for extreme nausea and dehydration. During those days in the cancer ward some of those who were dying called out and moaned distressingly, sometimes for hours, during the night. I was, at those moments, unable to shake off the belief that I too would be in that state within a few months. The signs of cancer had been missed on the mammogram two years earlier and, when the lump made itself evident, I was in Stage III. When I mentioned this experience of being gripped by the idea of death she said “Oh I know exactly what you mean, my mother has breast cancer, and every time she has an examination I go searching the internet to find out what I can.” This young woman was twenty four, and I fifty six at the time, and she had given me an unexpected small precious gift that I took with me out of that little cupboard of a room.. (shrink)

A woman with breast cancer takes a genetic test that predicts how active the tumors are and whether the benefits of chemotherapy outweigh the risks of side effects.A newlywed couple sends saliva samples to a start-up company to test for carrier genes for over one hundred inherited diseases, many of which are incurable or lethal.A heart transplant patient takes a blood test that detects patterns in gene expression to check for signs of rejection, making an invasive biopsy unnecessary.Each of the (...) tests described above either exists or is under development. Now, ten years after the release of a working draft of the human genome, major changes have made their way into medical practice, the marketplace, research, and .. (shrink)

How can a realistic ethical imagination about the future of a technology take shape? This article contains a reflection which is based on the experiences of an embedded ethicist in the context of biophysical research conducive to the development of photoacoustic mammography, which is intended for the non-invasive detection of breast cancer. Imagination in this context already informs the activities of the biophysical researchers, but its role is limited: biophysical future scenarios concentrate on the technological advances that photoacoustics could bring (...) about. In this article it is argued that it is advisable to also consider the medical practice and the ways in which this practice is likely to change as an effect of the introduction of photoacoustic mammography into it. On the basis of this more encompassing imaginative endeavor it is possible to get a clearer idea about how new technologies are able to contribute to human well being, which is informative for the setting of research-goals/priorities and a responsible implementation of new technologies into the world. (shrink)

OBJECTIVE: Pilot study to characterize treatment differences between patients treated in clinical trials and those treated in a clinical setting. Previous studies have shown higher survival rates for participants in trials of cancer therapy. This difference is observed even after rates are adjusted for important covariates such as age and stage of disease. DESIGN: Retrospective chart review. SETTING: Oncology outpatient department in a tertiary care hospital. PATIENTS: Ninety women 18 to 70 years of age with early-stage breast cancer who were (...) diagnosed in 1990. Fifty-one of the women were treated through clinical trials and 39 were treated outside of clinical trials. OUTCOME MEASURES: Number of blood tests, telephone calls, clinic visits and imaging procedures as well as intensity of chemotherapy and use of radiation therapy. The age of the patient and the stage of disease were important covariates. RESULTS: After the analysis was controlled for patient age and stage of disease, patients treated through a clinical trial were more likely to receive standard-dose chemotherapy (p = 0.020, 95% confidence interval 1.20 to 200.73) and more frequent blood tests (p < 0.001, 95% confidence interval 1.02 to 1.13) than other patients treated in the clinic. CONCLUSIONS: Our results provide a plausible mechanism for the observed survival advantage for participants in clinical trials in oncology. Further study is called for. If these results are confirmed, they have important implications for informed consent to participate in clinical trials and for clinical practice. (shrink)

Feminist bioethicists have explicitly recognized that women may bear the undue burden of iatrogenic disease, or disease deliberately created by health care. Further, the feminist critique of science, or the "science wars," as it is sometimes called, has affected the ways we approach scientific and medical knowledge when it comes to women. The idea that science is situated and constructed, rather than naturally revealed to us, has exposed androcentric tendencies in research as well as health-care practices. Indeed the highly successful (...) public relations campaign of the Breast Cancer Action "pink" campaign reminds us that not only do we now know more about women's health, but we also know that women's health issues .. (shrink)

Women’s embodied memories of “Dangerous Breasts”, generated as part of a wider collective memory project on women’s breasts, Iconstruct women as always at risk of our bodies turning against us. We trace through memory stories how we inscribe our bodies as “dangerous” through practices involving silence, fear, surveillance and diagnosis. We examine how regimes directed at the prevention and treatment of breast cancer serve, in our memories, to increase anxiety and distance us from our bodies and any sense of agency.

Cancer-related electronic support groups (ESGs) may be regarded as a complement to face-to-face groups when the latter are available, and as an alternative when they are not. Advantages over face-to-face groups include an absence of barriers imposed by geographic location, opportunities for anonymity that permit sensitive issues to be discussed, and opportunities to find peers online. ESGs can be especially valuable as navigation aids for those trying to find a way through the healthcare system and as a guide to the (...) cancer journey. Outcome indicators that could be used to evaluate the quality of ESGs as navigation aids need to be developed and tested. Conceptual models for the navigator role, such as the Facilitating Navigator Model, are appropriate for ESGs designed specifically for research purposes. A Shared or Tacit Model may be more appropriate for unmoderated ESGs. Both conceptual models raise issues in Internet research ethics that need to be address. (shrink)

This 2001 Presidential Address critically examines the mission of SBE and how it can be fulfilled. I begin with Brother Leo Ryan’s1994 Presidential Address, in which he asked how the SBE mission can be accomplished given the growing number of organizations that focus on business ethics. I take up his challenge by focusing on one objective of our stated mission: To help develop ethical business organizations. I examine two ways we might promote this objective: the Moral Market Model advocated by (...) John Boatright in his 1998 Presidential Address and the Market of Morality model advocated by Thomas Dunfee in his 1996 Presidential Address. I argue both views are limited because they focus only on market institutions. I conclude with an example of how breast cancer awareness among African-American women was increased by relying on a multi-institutional approach: organizations (beauty parlors), individuals (hairdressers, who distributed the information), personal relationships, culture, and educational and health care institutions. The question remains: Who are our hairdressers? (shrink)

This paper tells the story of a recent laboratory medicine controversy in the Canadian province of Newfoundland and Labrador. During the controversy, a DAKOAutostainer machine was blamed for inaccurate breast cancer test results that led to the suboptimal treatment of many patients. In truth, the machine was not at fault. Using concepts developed by Bruno Latour and Pierre Bourdieu, we document the changing nature of the DAKO machine’s agency before, during, and after the controversy, and we make the ethical argument (...) that treating the machine as a scapegoat was harmful to patients. The mistreatment of patients was directly tied to a misrepresentation of the DAKO machine. The way to avoid both forms of mistreatment would have been to include all humans and nonhumans affected by the controversy in the network of decision-making. (shrink)

Modest_Witness@Second_Millennium. FemaleMan_Meets_OncoMouse explores the roles of stories, figures, dreams, theories, facts, delusions, advertising, institutions, economic arrangements, publishing practices, scientific advances, and politics in twentieth- century technoscience. The book's title is an e-mail address. With it, Haraway locates herself and her readers in a sprawling net of associations more far-flung than the Internet. The address is not a cozy home. There is no innocent place to stand in the world where the book's author figure, FemaleMan, encounters DuPont's controversial laboratory rodent, OncoMouse. (...) Haraway sees the world of contemporary technoscience as a drama. Information sciences and life sciences are at the center of the dramatic action. Scenes are set in landscapes where maps of human genetic differences are stored in databases, racialized bodies are reconfigured by morphing for photographs in popular magazines, and transgenic mice important to breast cancer research are patented intellectual property. The actors are many, and not all are human. Beginning with the Modest Witness, the key figure in the Science Revolution, Haraway shows us the trouble lurking in race and gender- marked practices for attesting to matters of fact. In later scenes, Haraway explores the kinship relations among the many cyborg creatures produced in the late twentieth-century--in nuclear research, genetic engineering, reproductive technologies, computer-mediated representational practices, and mutations in biological approaches to "race.". (shrink)

The use of aggregated quality of life estimatesin the formation of public policy and practiceguidelines raises concerns about the moralrelevance of variability in values inpreferences for health care. This variabilitymay reflect unique and deeply held beliefs thatmay be lost when averaged with the preferencesof other individuals. Feminist moral theorieswhich argue for attention to context andparticularity underline the importance ofascertaining the extent to which differences inpreferences for health states revealinformation which is morally relevant toclinicians and policymakers. To facilitatethese considerations, we present (...) an empiricalstudy of preferences for the timing andoccurrence of health states associated withhormone replacement therapy (HRT). Sixteenwomen between the ages of 45 and 55 wereenrolled in this pilot study. Theirpreferences regarding five health statesassociated with HRT (menopausal symptoms, sideeffects of HRT, breast cancer, myocardialinfarction, and osteoporosis) were assessed inquantitative terms known as utilities. Twostandard methods, the visual analog scale (VAS) and the standard gamble (SG), were used toassess utility and time preference (calculatedas a discount rate). The wide variability ofresponses underlines the importance oftailoring health care to individual women'spreferences. Policy guidelines whichincorporate utility analysis must recognize thenormative limitations of aggregatedpreferences, and the moral relevance ofindividual conceptions of health. (shrink)

Summary Transsexuals are individuals who identify as a member of the gender opposite to that which they are born. Many transsexuals report that they have always had a feeling of a mismatch between their inner gender-based ‘‘body image’’ and that of their body’s actual physical form. Often transsexuals undergo gender reassignment surgery to convert their bodies to the sex they feel they should have been born. The vivid sensation of still having a limb although it has been amputated, a phantom (...) limb, was first described by Weir Mitchell over a century ago. The same phenomenon is also occurs after amputation of the penis or a breast. Around 60% of men who have had to have their penis amputated for cancer will experience a phantom penis. It has recently been shown that a significant factor in these phantom sensations is ‘‘cross-activation’’ between the de-afferented cortex and surrounding areas. Despite this it also known that much of our body image is innately ‘‘hard-wired’’ into our brains; congenitally limbless patients can still experience phantom sensations. We hypothesise that, perhaps due to a dissociation during embryological development, the brains of transsexuals are ‘‘hard-wired’’ in manner, which is opposite to that of their biological sex. We go on to predict that male-to-female transsexuals will be much less likely to experience a phantom penis than a ‘‘normal’’ man who has had his penis amputated for another reason. The same will be true of female-to-male transsexuals who have had breast removal surgery. We also predict that some female-to-male transsexuals will have a phantom penis even although there is not one physically there. We believe that this is an easily testable hypothesis, which, if correct, would offer insights into both the basis of transsexuality and provide farther evidence that we have a gender specific body image, with a strong innate component that is ‘‘hard-wired’’ into our brains. This would furnish us with a better understanding the mechanism by which nature and nurture interact to link the brain-based internal body image with external sexual morphology.. (shrink)

America has poured about 200 billion dollars into cancer research since President Nixon declared war on cancer in 1971. How is the war going after three decades? Why do assessments vary as widely as “beating cancer” and “loosing the war on cancer?”.

In recent cancer research, strong and apparently conflicting epistemological stances have been advocated by different research teams in a mist of an ever-growing body of knowledge ignited by ever-more perplexing and non-conclusive experimental facts: in the past few years, an 'organicist' approach investigating cancer development at the tissue level has challenged the established and so-called 'reductionist' approach focusing on disentangling the genetic and molecular circuitry of carcinogenesis. This article reviews the ways in which 'organicism' and 'reductionism' are used and opposed (...) in this context, with an aim at clarifying the debate. Methodological, epistemological and ontological implications of both approaches are discussed. We argue that the 'organicist/reductionist' opposition in the present case of carcinogenesis is more a matter of diverging heuristics than a claim about theoretical or ontological (ir)reducibility. As a matter of fact, except for the downward causation claim, which we question, we argue that the organicist arguments are compatible with the reductionist approach. Moreover, we speculate that both approaches, which currently focus on specific entities i.e., genes versus tissues, will need to shift their conceptual frameworks to studying complex arrays of relationships potentially ranging over several levels of entities, as is the case with 'systems biology'. (shrink)

Metaphysical presuppositions are important for guiding scientific practices and research. The success of twentieth-century biology, for instance, is largely attributable to presupposing that complex biological processes are reducible to elementary components. However, some biologists have challenged the sufficiency of reductionism for investigating complex biological phenomena and have proposed alternative presuppositions like organicism. In this article, contemporary cancer research is used as a case study to explore the importance of metaphysical presuppositions for guiding research. The predominant paradigm directing cancer research is (...) the somatic mutation theory, in which mutated genes are presumed to be ultimately responsible for explaining carcinogenesis. This reductionistic approach to cancer has been criticised recently, and an organistic approach has been proposed. The article concludes with a discussion of the reciprocal interaction of metaphysical presuppositions and scientific practices for investigating cancer's complex nature. (shrink)

In 2006, I was diagnosed with cancer. This began a crash course in real-world medical ethics. Having cancer was awful, but it was instructive, too. The experience gave me a new understanding of what my profession is about. Individuals in the bioethics field often address topics related to cancer, such as medical decision-making, the patient-physician relationship, clinical trials, and access to health care. Yet few engaged in this work have lived with cancer themselves. Experience as a cancer patient or family (...) caregiver extends and deepens one’s thinking about serious illness and bioethics. During my time as a cancer patient, I kept in touch with several colleagues immersed in their own cancer .. (shrink)

The current mainstream in cancer research favours the idea that malignant tumour initiation is the result of a genetic mutation. Tumour development and progression is then explained as a sort of micro-evolutionary process, whereby an initial genetic alteration leads to abnormal proliferation of a single cell that leads to a population of clonally derived cells. It is widely claimed that tumour progression is driven by natural selection, based on the assumption that the initial tumour cells acquire some properties that endow (...) such cells with a selective advantage over the normal cells from which the tumour cells are derived. The standard view assumes that the transformed bodily cell somehow acquires "responsiveness" to natural selection independently of the whole organism to which the cell belongs. Yet, it is never explained where such an acquired capacity to respond to natural selection by the individual bodily cell comes from. This situation poses many difficult questions that so far have been left unanswered. For example, there is no explanation why some cells belonging to an organised whole and as such having no independent capacity for survival, apparently become 'independent' entities, able to respond to selective pressures in an autonomous fashion and then to be evaluated by natural selection. Hereunder it is argued that such a qualitative change cannot be the consequence of specific genetic mutations. Moreover, it is shown that natural selection is unlikely to be acting within the organism during tumour development and progression and that tumour evolution is a random, non-adaptive process, driven by no fundamental biological principle. Thus, mutations in the so-called oncogenes and tumour suppressor genes observed in epithelial cancers (that constitute more than 90% of all cancers) are not the result of selection for better cellular growth or survival under restrictive conditions. Instead, here it is suggested that they are the consequence of genetic drift acting upon gene functions that become non-relevant, either for the individual or the species fitness, once the organism is past its reproductive prime and as such, they also become superfluous for cell survival in the short term. It is proposed that the origin of cancer is epigenetic and it is a consequence of the need for a continued turnover of the individuals that constitute a species. (shrink)

Objectives: The aims of this study were to: (1) investigate patients’ views on euthanasia and physician-assisted suicide (PAS), and (2) examine the impact of question wording and patients’ own definitions on their responses. Design: Cross-sectional survey of consecutive patients with cancer. Setting: Newcastle (Australia) Mater Hospital Outpatients Clinic. Participants: Patients over 18 years of age, attending the clinic for follow-up consultation or treatment by a medical oncologist, radiation oncologist or haematologist. Main Outcome Measures: Face-to-face patient interviews were conducted examining attitudes (...) to euthanasia and PAS. Results: 236 patients with cancer (24% participation rate; 87% consent rate) were interviewed. Though the majority of participants supported the idea of euthanasia, patient views varied significantly according to question wording and their own understanding of the definition of euthanasia. Conclusions: Researchers need to be circumspect about framing and interpreting questions about support of ‘euthanasia’, as the term can mean different things to different people, and response may depend upon the specifics of the question asked. (shrink)

this paper we argue that the formalism can also be applied to modelling the hierarchical structure of physical mechanisms. The resulting network contains quantitative information about probabilities, as well as qualitative information about mechanistic structure and causal relations. Since information about probabilities, mechanisms and causal relations are vital for prediction, explanation and control respectively, a recursive Bayesian net can be applied to all these tasks. We show how a Recursive Bayesian Net can be used to model mechanisms in cancer science. (...) The highest level of the proposed model will contain variables at the clinical level, while a middle level will map the structure of the DNA damage response mechanism and the lowest level will contain information about gene expression. (shrink)

A central issue confronting both philosophers and practitioners in formulating an analysis of causation is the question of what constitutes evidence for a causal association. From the 1950s onward, the biostatistician Jerome Cornfield put himself at the center of a controversial debate over whether cigarette smoking was a causative factor in the incidence of lung cancer. Despite criticisms from distinguished statisticians such as Fisher, Berkson and Neyman, Cornfield argued that a review of the scientific evidence supported the conclusion of a (...) causal association. Cornfield's odds ratio in case‐control studies — as a good estimate of relative risk — together with his argument of ''explanatory common cause'' became important tools to use in confronting the skeptics. In this paper, I revisit this important historical episode as recorded in the Journal of National Cancer Institute and the Journal of the American Statistical Association. More specifically, I examine Cornfield's necessary condition on the minimum magnitudes of relative risk in light of confounders. This episode yields important insight into the nature of causal inference by showing the sorts of evidence appealed to by practitioners in supporting claims of causal association. I discuss this event in light of the manipulationist account of causation. (shrink)

Myriad Genetics holds a patent on testing for the hereditary breast and ovarian cancer genes, BRCA1 and BRCA2, and therefore has a forced monopoly on this critical genetic test. Myriad launched a Direct-to-Consumer (DTC) marketing campaign in the Northeast United States in September 2007 and plans to expand that campaign to Florida and Texas in 2008. The ethics of Myriad's patent, forced monopoly and DTC campaign will be reviewed, as well as the impact of this situation on patient access and (...) care, physician liability, and the future of DTC campaigns for genetic testing. (shrink)

In this paper, we recommend expanding infertility insurance mandates to people who may become infertile because of cancer treatments. Such an expansion would ensure cancer patients can receive fertility preservation technology (FPT) prior to commencing treatment. We base our proposal for extending coverage to cancer patients on the infertility mandate in Massachusetts because it is one of the most inclusive. While we use Massachusetts as a model, our arguments and analysis of possible routes to coverage can be applied to all (...) states' seeking inclusive coverage for infertility treatment. Furthermore, our proposal can also be applied to people with other diseases who may be rendered infertile by treatment. (shrink)

While medicine may agree in principle that cancer screening requires informed consent, such consent is not, in fact, common practice. In the case of prostate-cancer screening this means that men in large numbers undergo PSA testing with little understanding of its liabilities – in particular, that it may or may not decrease mortality, often detects cancer of questionable significance, and may lead to unnecessary surgery. Given that prostate cancer is known to be overtreated and that family history is a risk (...) factor, it follows that a man diagnosed with prostate cancer, even if it is of no clinical significance, automatically promotes his son into the high-risk category; and given that those so categorized are subject to heightened medical surveillance and that the more diligently medicine searches for prostate cancer the more likely it is to find it, it follows that the sons of men diagnosed as a result of PSA testing are at risk of being overdiagnosed (and overtreated) precisely because their father was. Twenty years into the PSA revolution, its generational consequences have not been discussed in the medical literature. (shrink)

Since the microbiological revolution, most infectious diseases have been defined and classified according to an etiologic criterion, i.e. the identification of single, external necessary causes (for example, Mycobacterium for tuberculosis). This is not the case with cancer. Not only external necessary causes of cancer have not been identified, but also the morphological classification cannot be based on univocal criteria. Although neoplasia and anaplasia appear to be universal attributes of cancer, these events are only quantitative. Neoplastic growth can be fast or (...) slow (development may take weeks or years), and tissue pathologies are difficult to detect from normal tissue in some cancers but are obvious in others. Common special properties of anaplasia appear to be concealed in the wide range of morphologies. In the absence of a coherent morphological definition, and of external necessary causes (such as bacteria for infectious diseases), a mechanistic definition could be adopted. However, unless molecular biology discovers specific mechanistic steps in carcinogenesis, which indicate the existence of necessary events in carcinogenesis, we cannot adopt a univocal (monothetic) definition of cancer. The alternative is to use a polythetic definition, according to Wittgenstein's model of a long rope twisted together out of many shorter fibres. (shrink)

To get an idea of how personalized medicine could reshape patient care in the years ahead, one need only look at how it is beginning to reshape the care of patients with cancer. Cancer is where personalized medicine has gained its firmest foothold. The longstanding scattershot practice of prescribing the same drugs to virtually all patients with a particular type of cancer is giving way to a more selective approach in which genetic tests are run on tumor samples to identify (...) which patients are likely to benefit from which drugs, or to tell whether they need drugs at all. This shift holds the prospect of improving cancer care and the stewardship of costly cancer care resources. It has had its successes and failures .. (shrink)

: Originally presented during Ethic Rounds at the Dana-Farber Cancer Institute, this commentary on the case of a patient treated for life-threatening cancer explores the responsibilities of health care providers when addressing the patient's desire to adopt a child.

The triumvirate of HIV/AIDS, tuberculosis, and malaria have dominated our public health focus in the developing world. Having claimed millions of lives, these infectious diseases have prompted a large-scale response. Concomitant with these efforts has been a burgeoning bioethics literature examining global health and distributive justice. A scholarly waste-land only a decade ago, there is now a growing and rich literature that aims to unpack our moral obligations when it comes to diseases that affect the majority of the world (many (...) living in absolute poverty). Now, added to the persistent challenges posed by infectious diseases is the growing burden of diseases such as cancer, which disproportionately affect .. (shrink)

When prostate-specific antigen (PSA) testing was introduced, proponents expected it to cut prostate-cancer mortality and did not expect it to unleash an epidemic of unnecessary treatments. Now that evidence of a mortality benefit remains unclear while evidence of overtreatment in undeniable, there is understandable interest in reducing the human costs of the PSA system. Two related drugs, finasteride and dutasteride, both proven to reduce the incidence of prostate cancer and the ?risk of diagnosis,? are being promoted accordingly. However, if not (...) for the flaws of the PSA system the use of these drugs for purposes of prevention would lose its rationale. Not only are the drugs in this sense dependent on a faulty system, but their own mortality benefits are as speculative as PSA's?in addition to which, they introduce new risks. (shrink)

This article provides a historical, philosophical, and psychological analysis of the recent discovery that reoviruses are oncolytic, capable of infecting and destroying many kinds of cancer cells. After describing Patrick Lee's very indirect path to this discovery, I discuss the implications of this case for understanding the nature of scientific discovery, including the economy of research, anomaly recognition, hypothesis formation, and the role of emotion in scientific thinking. Lee's discoveries involved a combination of serendipity, abductive and deductive inference, and emotional (...) cognition. (shrink)

How should probabilities be interpreted in causal models in the social and health sciences? In this paper we take a step towards answering this question by investigating the case of cancer in epidemiology and arguing that the objective Bayesian interpretation is most appropriate in this domain.

Karolinska Institutet, Stockholm, Sweden Mats G. Hansson Uppsala University, Sweden Jan Carlstedt-Duke Karolinska Institutet, Stockholm, Sweden Martin Ritzen Karolinska Institutet, Stockholm, Sweden Ingemar Persson Karolinska Institutet, Stockholm, Sweden Helle Kieler Karolinska Institutet, Stockholm, Sweden * Corresponding author: Christina M. Hultman, Department of Medical Epidemiology and Biostatistics, Box 281, SE-171 77 Stockholm, Sweden. Tel.: +46 8 52483893; +46 70 3621031; Fax: +46 8 314975; Email: Christina.Hultman{at}ki.se ' + u + '@' + d + ' '//--> Abstract Since the 1970s, estrogen have (...) sometimes been used in adolescent girls to reduce very tall adult expected height. Worries about long-term effects have led to a proposal to link treatment data with cancer registers. How should one deal with informed consent for such a study? We designed a qualitative study with semi-structured telephone interviews. From 1200 women who were to be followed-up in cancer registers, we randomly selected 22 women. Major themes were a wish to be involved and a positive attitude to the proposed register research. The women did not express worry after reading the study protocol, but did convey considerable frustration that this research had not been initiated earlier. Active consent was not seen as crucial. We found strong interest in a high participation rate and a concern over missing data. The selection of information and consent or the decision to go ahead without consent in register follow-up is a delicate balancing act. Study participants wish to be contacted, but acknowledge the primary goal of answering important questions. Our study provides support for safeguarding privacy in epidemiological linkage studies and in follow-up of medical treatment without losing the scientific value by requesting for informed consent. CiteULike Connotea Del.icio.us What's this? (shrink)

Advances in genetic research have created the need to inform consumers. Yet, the communication of hereditary risk and of the options for how to deal with it is a difficult task. Due to the abstract nature of genetics, people tend to overestimate or underestimate their risk. This paper addresses the issue of how to communicate risk information on hereditary breast and ovarian cancer through an online application. The core of the paper illustrates the design of OPERA, a risk assessment instrument (...) that applies the UK National Institute of Health and Clinical Excellence's guidelines on the basis of (i) the number of relatives on the same side of the family with the same cancer or cancers that are known to run together; (ii) the ages of these relatives at diagnosis and (iii) the closeness of the family relationship with the person who is doing the assessment. By relying on the argumentation theory, we explain how the communication strategy that OPERA implements is essentially based on Perelman and Olbrechts-Tyteca's deductive argumentation by association. By using as premises “facts” (propositions about reality that can be assumed without further justification) and “truths” (propositions that make connections about facts), OPERA delivers its claims with an ex auctoritate causal link aimed at transferring the audience's acceptance of the cause to the effect. Overall, the design of OPERA rests on its capacity to induce users' active processing of risk information through an appeal to their reasoning faculty. In the conclusion, we present some results from a pilot evaluation of users' acceptance of OPERA. (shrink)

We discuss our surgical philosophy concerning the subtle interplay between the size of the surgical margin taken and the resultant morbidity from ablative oncological. procedures, which is ever more evident in the treatment of head and neck malignancy. The extent of tissue resection is determined by the "trade off" between cancer control and the perioperative, functional and aesthetic morbidity and mortality of the surgery. We also discuss our dilemmas concerning recent minimally invasive endoscopic microsurgical. techniques for the trans-oral laser removal. (...) or co-ablation of aero-digestive tract tumours, which result in a minimal. surgical margin of oncological clearance. By a process of inductive argument as to the nature of the surgical margin, we consider whether the risks of taking a lesser margin with adjuvant therapy is justified by the attendant gain in reduced surgical morbidity and the possible costs in tumour control. (c) 2006 Elsevier Ltd. All rights reserved. (shrink)

PURPOSE: The offer to return research results to participants is increasingly recognized as an ethical obligation, although few researchers routinely return results. We examined the needs and attitudes of parents of children with cancer and of adolescents with cancer to the return of research results. METHODS: Seven experts in research ethics scored content validity on parent and adolescent questionnaires previously developed through focus group and phone interviews. The questionnaires were revised and provided to 30 parents and 10 adolescents in a (...) tertiary care oncology setting. RESULTS: The content validity index for individual questions and the overall questionnaires scored as 0.86 for both questionnaires. All 30 parents and 10 adolescents who agreed to participate returned questionnaires. The majority (>95%) indicated that they had a strong or very strong right to receive results. Letter or e-mail was a satisfactory means to return results described as good or neutral (66% parents, 100% adolescents) but more participants wished face-to-face disclosure of results with negative implications (50% parents, 60% adolescents). Very few wanted results disseminated through a Web site. The majority acknowledged the need for peer-review before disclosure (60% of adolescents and parents) but did not want "to be the last to know." CONCLUSIONS: Our data suggest that pediatric oncology patients and parents of children with cancer strongly feel that they have a right to research results, and that they wish to receive these in a timely manner. (shrink)

People with cancer, who live better or longer than expected or who recover completely despite a poor medical prognosis, usually go through a profound change and self-development. This paper is an attempt to describe and understand the nature of this transformation by examining how initially unexamined conceptions of oneself, life, illness, etc., become manifest and get developed. One feature of this process is that people leave the present-day medical conception, which is based on the notion of victim of and battle (...) against illness, and discover that they have other resources for dealing with life and illness. It will be argued that at the centre of this transformation lies the discovery and development of the will, which is closely associated with the willingness to examine one's conceptions of oneself, health, illness and life. (shrink)

Cancer is a group of diseases that are complicated by various treatment choices available. Information exchange between a patient and physician is critical in helping people to understand what is happening to them and what options for therapy are recommended and available. When information is not exchanged, information control by one or both of the participants occurs. Information needs to be taken into account by both health care professional and patients in making decisions during the crucial phases of care. The (...) phases of care presented are a diagnosis, treatment, the decision, and a recurrence. Factors that influence effective information exchange among patient-provider systems are discussed. (shrink)

Background: Cancer patients are at risk of developing blood clots in their veins - venous thromboembolism(VTE) - which often takes the form of a pulmonary embolism or deep vein thrombosis. Therisk increases with advanced disease. Evidence based treatment is low molecular weightheparin (LMWH) by daily subcutaneous injection. The aim of this research is to explore thebarriers for doctors in the UK when diagnosing and treating advanced cancer patients withVTE.MethodQualitative, in-depth interview study with 45 doctors (30 across Yorkshire, England and 15across (...) South Wales). Doctors were from three specialties: oncology, palliative medicine andgeneral practice, with a mixture of senior and junior staff. Framework analysis was used. Results: Doctors opinions as to whether LMWH treatment was ethically appropriate for patients whowere symptomatic from VTE but at end of life existed on a shifting continuum, largelyinfluenced by patient prognosis. A lack of immediate benefit coupled with the discomfort of adaily injection had influenced some doctors not to prescribe LMWH. The point at whichLMWH injections should be stopped in patients at the end of life was ambiguous. Someperceived overcaution in their own and other clinicians treatment of patients. Viewpointswere divergent on whether dying of a PE was considered a "good way to go". Theinterventionalism and ethos of palliative medicine was discussed. Conclusions: Decisions are difficult for doctors to make regarding LMWH treatment for advanced cancerpatients with VTE. Treatment for this patient group is bounded to the doctors own moral andethical frameworks. (shrink)

Background A topic of great concern in bioethics is the medical research conducted in poor countries sponsored by wealthy nations. Western drug companies increasingly view Latin America as a proper place for clinical research trials. The region combines a large population, modern medical facilities, and low per capita incomes. Participants from developing countries may have little or non alternative means of treatment other than that offered through clinical trials. Therefore, the provision of a valid informed consent is important. Methods To (...) gain insight about some aspects of the informed consent procedure in a major cancer centre in Mexico, we conducted a three-step evaluation process: 1) a ten point multiple choice survey questionnaires, was used to explore some aspects of the patients' experiences during the informed consent process, 2) researchers' knowledge about specific aspects of the informed consent was evaluated in this study using survey questionnaires; and 3) the comprehensibility, readability and number of pages of the consent forms were analysed. The socioeconomic and educational level of the patients, were also considered. Results were reported using a numerical scale. Results Thirty five patients, 20 doctors, and 10 individuals working at the hospital agreed to participate in the study. Eighty three percent of the patients in the study were classified as living in poverty; education level was poor or non existent, and 31% of the patients were illiterate. The consent forms were difficult to understand according to 49% of the patients, most doctors agreed that the forms were not comprehensible to the patients. The average length of the IC documents analysed was 14 pages, and the readability average score was equivalent to 8TH Grade. Conclusion The results presented in this work describe some relevant characteristics of the population seen at public health care institutions in Mexico. Poverty, limited or no education, and the complexity of the information provided to the patients may question the validity of the informed consent procedure in this group of patients. (shrink)

Illness narratives from patients with colorectal cancer commonly record patterns of change in social relationships that follow the diagnosis and treatment of the condition. We believe that these changes are best explained as a process of facework, which reflects losses of face on the part of the patient, and which assists in the creation of new faces that convey new senses of identity. Facework is familiar in the work by E. Goffman (1955) and has been extensively reworked since his time. (...) There is considerable agreement that face is a pervasive and universal constituent of all social interaction, and that it expresses the subject's view of the way he or she would like to be considered by others in interactions. Ho's concept of multiple faces negotiated dynamically according to social context is particularly useful in understanding the purpose and techniques of facework (D. Y.-F. Ho, 1994). We propose a model of face that uses dignity as the face-expression of personal attributes and acquisitions, and honor as the face-expression of systemic capabilities and attainments. This model can be used to examine individual variations in response and adaptation to colon cancer and its treatment, and it provides a useful means of teaching health care workers about the experience of illness. (shrink)

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (...) (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

The highly structured mechanisms of cancers, their tendency to occur as a response to environmental stress, and the existence of oncogenes, suggest that neoplasticity may represent more than a biological disfunction. It is proposed that cancer exists as a phylogenetic mechanism serving to promote hyperevolution, albeit at the expense of the ontogeny, that is similar to a process recently discovered in bacterial mutations. Cell-surface-associated nucleic acid in tumorigenic cells and sperm cell vectorization of foreign DNA indicate the existence of essential (...) mechanisms necessary to the occurrence of cancer mediated hyperevolution. An analysis of the proposed mechanism indicates that for mutagenesis of chemical cytology, stress induced neoplasticity confers an evolutionary advantage of more than two orders of magnitude. (shrink)

Lung cancer is the leading cause of cancer deaths, yet research funding is by far the lowest for lung cancer than for any other cancer compared with respective death rates. Although this discrepancy should appear alarming, one could argue that lung cancer deserves less attention because it is more attributable to poor life choices than other common cancers. Accordingly, the general question that I ask in this article is whether victims of more avoidable diseases, such as lung cancer, deserve to (...) have their needs taken into less consideration than those of less avoidable diseases, on the grounds of either retributive or distributive justice. Such unequal treatment may be the “penalty” one incurs for negligent or reckless behavior. However, I hope to show that such unequal treatment cannot be supported by any coherent accounts of retributive or distributive justice. (shrink)

PURPOSE: There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. METHODS: A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against (...) providing results; and barriers to providing results. RESULTS: Four hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences. CONCLUSION: Parents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated. (shrink)

(2013). Review of Rebecca Dresser, ed., Malignant: Medical Ethicists Confront Cancer. The American Journal of Bioethics: Vol. 13, No. 3, pp. 51-52. doi: 10.1080/15265161.2013.760985.

Approximately 1 in 30 people develop cancer due to an underlying familial predisposition. Genetic counselling and testing for people with (and at risk of) familial cancer are becoming more widely available, but service providers need to address challenging issues in relation to privacy and property. As in any counselling situation, a genetic counsellor seeks to ensure that the principles of autonomy, confidentiality, beneficence, and equity operate in favour of the client. But in dealing with a familial disorder, the application of (...) these principles to the individual must be balanced with the potential for these principles to apply to other family members. This paper summarises the recent experience of a familial cancer service in seeking to avoid situations in which these principles, operating for both individual clients and their relatives, can come into conflict. (shrink)

This essay considers the tension between political liberalism and gender equality in the light of social construction and multiculturalism. The tension is exemplified by the work of Martha Nussbaum, who tries to reconcile a belief in the universality of certain liberal values such as gender equality with a political liberal tolerance for cultural practices that violate gender equality. The essay distinguishes between first? and second?order conceptions of autonomy, and shows that political liberals mistakenly prioritise second?order autonomy. This prioritisation leads political (...) liberals to seek to limit state interference in individuals' choices. However, the essay argues that if options, choices and the preferences which lead to them are socially influenced or constructed, it is no longer clear that state non?interference secures autonomy. Instead, it becomes a matter of justice what the content of the social or state influence is, which options are open to people, and political liberalism cannot deal with many forms of injustice. Rather than emphasising state neutrality, liberals should endorse state prohibition of practices which cause significant harm to those who choose them, if they are chosen only in response to unjust norms. (shrink)

The dominant position in Philosophy of Science contends that downward causation is an illusion. Instead, we argue that downward causation doesn’t introduce vicious circles either in physics or in biology. We also question the metaphysical claim that “physical facts fix all the facts.” Downward causation does not imply any contradiction if we reject the assumption of the completeness and the causal closure of the physical world that this assertion contains. We provide an argument for rejecting this assumption. Furthermore, this allows (...) us to reconsider the concept of diachronic emergence. (shrink)