Nobel Laureate Kazou Ishiguro’s (2010) novel “Never Let Me Go” follows individuals intentionally bred to donate their organs over multiple years, ultimately dying when the final “vital organs” are...

Berger and Miller argue that contemporary medical education directed toward “cultural competency” fails to address the structural inequities and systemic racism underpinning health dispariti...

In lieu of an abstract, here is a brief excerpt of the content:Consenting for Novel and Dangerous Surgical Procedures with Minimal Supporting EvidenceMichelle J. ClarkeFrank1 was a 19–year–old man referred to me after a workup for back pain led to the discovery of a large, aggressive tumor in his sacrum. The tumor wrapped around the nerves controlling bowel, bladder, and leg function. We performed a needle biopsy and learned that the tumor was an angiosarcoma, an extremely aggressive and usually deadly (...) form of cancer. However, the tumor was unique in that it theoretically could be cured if removed in one piece. But, to do so would necessitate sacrificing the nerves, leaving the patient irreversibly incontinent, lacking sexual function, and confined to a wheelchair.Once we knew the diagnosis, Frank came to the office with his family to discuss treatment options. He appeared terrified and was almost silent through the appointment, deferring most questions to his parents. Due to the speed of tumor growth, we discussed palliative therapy, conventional treatment, and the one–piece or “en bloc” surgery, which was new and unproven for his disease. Based on the remarkable tumor growth we noted during the work–up, with palliative treatment the patient would likely survive for less than six months. Conventional treatment, in which surgery is done to remove part of the tumor while sparing the nerves to bowel and bladder function, was known to have a high rate of recurrence and death. Further, this tumor didn’t respond well to radiation and chemotherapy, so chance of survival was limited, although his life might have been extended for a short period. Thus our conversation turned to the novel “en bloc” procedure.The en bloc procedure offered a hope of long–term survival unlike the other options. However, this came with an enormous cost. The surgery itself would be planned to occur over three days with five separate surgical teams and a very real chance of major complications or death. Nerves to bowel and bladder would be cut, irreversibly leaving the patient without sexual function, and completely incontinent with a urinary catheter and colostomy. Walking was expected to be disrupted or potentially impossible due to the nerve resection. We went to great lengths over the course of many visits to describe the impact of the surgery on the patient’s function, and the impact on his quality of life. To make matters more challenging, as this procedure was so new and the tumor so rare, research did not yet exist to quantify his likelihood of long–term survival.Personally I was very uncomfortable with the situation. From a medical standpoint, the surgery offered was the best distillation of research and professional experience. En bloc surgery offered the best—if not the only—chance for survival in [End Page 5] this young man. Additionally, having treated many spine–injured patients I was aware that many patients with similar deficits led happy and productive lives following an emotional and physical adjustment period. However the surgery was also extreme. I worried that we would not be able to accomplish the goal of a one–piece resection and would accidentally spill some of the tumor, creating all of the deficits but no survival benefit. Frankly, I thought there was a 25% chance that would happen, which was explained to the family preoperatively. Were we overreaching our abilities and making a dying patient’s life worse by proceeding?Second, I was uneasy about the social situation. The patient’s family was very supportive, traveling with him to all appointments and assisting with his care. The patient himself usually deferred all scheduling to his mother, which wasn’t entirely unusual for such a young man. However it was difficult to grasp how much the patient understood of his disease or supported the plan. We attempted to delve more deeply into his thoughts, including without his parents present, but got only short answers, which revealed little. While the family appeared to have accepted the diagnosis and wanted to get to the business of treatment, the patient seemed to me to still carry the shock of his recent cancer diagnosis. Pushed by the rapid tumor growth, we were limited in how long we could wait for... (shrink)

Bioethicists in healthcare institutions have the skills and insights and can and must facilitate and promote measures that address deeply ingrained structural issues that exacerbate health inequity...

BackgroundThe ARRIVE (Animal Research: Reporting of In Vivo Experiments) guidelines are widely endorsed but compliance is limited. We sought to determine whether journal-requested completion of an ARRIVE checklist improves full compliance with the guidelines.MethodsIn a randomised controlled trial, manuscripts reporting in vivo animal research submitted to PLOS ONE (March–June 2015) were randomly allocated to either requested completion of an ARRIVE checklist or current standard practice. Authors, academic editors, and peer reviewers were blinded to group allocation. Trained reviewers performed outcome adjudication (...) in duplicate by assessing manuscripts against an operationalised version of the ARRIVE guidelines that consists 108 items. Our primary outcome was the between-group differences in the proportion of manuscripts meeting all ARRIVE guideline checklist subitems.ResultsWe randomised 1689 manuscripts (control: n = 844, intervention: n = 845), of which 1269 were sent for peer review and 762 (control: n = 340; intervention: n = 332) accepted for publication. No manuscript in either group achieved full compliance with the ARRIVE checklist. Details of animal husbandry (ARRIVE subitem 9b) was the only subitem to show improvements in reporting, with the proportion of compliant manuscripts rising from 52.1 to 74.1% (X2 = 34.0, df = 1, p = 2.1 × 10−7) in the control and intervention groups, respectively.ConclusionsThese results suggest that altering the editorial process to include requests for a completed ARRIVE checklist is not enough to improve compliance with the ARRIVE guidelines. Other approaches, such as more stringent editorial policies or a targeted approach on key quality items, may promote improvements in reporting. (shrink)

Im Jahre 1998 verblüfften Andy Clark und David Chalmers die philosophische Gemeinschaft mit der so genannten These des erweiterten Geistes, die im Kern besagt, dass kognitive Systeme nicht-biologische Komponenten enthalten können und sich damit über die Grenzen biologischer Organismen hinaus erstrecken können. Die These wird seitdem nicht nur von Philosophen, sondern auch von Kognitions- und Neurowissenschaftlern intensiv und kontrovers diskutiert. In den Beiträgen, die in dem vorliegenden ersten deutschsprachigen Band zur These des erweiterten Geistes versammelt sind, werden u.a. die folgenden (...) Fragen behandelt: Was soll es heißen, dass der Geist nicht (nur) im Kopf ist? In welchem Sinne könnte er erweitert sein, und welche Möglichkeiten der Erweiterung gibt es? Welche Zusammenhänge bestehen zwischen Geist und Kognition sowie zwischen Kopplung und Konstitution? Was genau besagt der von Clark und Chalmers vorgebrachte aktive Externalismus? Welche Bedeutung hat die These des erweiterten Geistes für repräsentationalistische und für funktionalistische Theorien des Geistes sowie für Theorien kollektiver Intentionalität und sozialer Kognition? Welche Anwendungen der These könnte es geben? (shrink)

Prenatal genetic testing is becoming available for an increasingly broad set of diseases, and it is only a matter of time before parents can choose to test for hundreds, if not thousands, of genetic conditions in their fetuses. Should access to certain kinds of fetal genetic information be limited, and if so, on what basis? We evaluate a range of considerations including reproductive autonomy, parental rights, disability rights, and the rights and interests of the fetus as a potential future child. (...) We conclude that parents should be able to access information that could be useful during pregnancy, but that testing for non-medical information should be limited. Next, we argue that the government lacks a compelling state interest in regulating prenatal genetic testing and propose that regulation should occur through medical professional organizations. Finally, we present a framework for determining what testing physicians should recommend, offer neutrally, or not offer at all. (shrink)

Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome – its common nature – has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of the (...) genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage framework and the common resource framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research. (shrink)

This paper reviews common advertising claims by egg freezing companies and evaluates the medical evidence behind those claims. It then surveys legal standards for truth in advertising, including FTC and FDA regulations and the First Amendment right to free speech. Professional standards for medical advertising, such as guidelines published by the American Society for Reproductive Medicine, the American College of Obstetricians and Gynecologists, and the American Medical Association, are also summarized. A number of claims, many of which relate to the (...) targeting of younger women for eOC, are found to breach legal and ethical standards for truth in advertising. The ethical implications of misleading advertising claims are also discussed, and the central narrative woven by OC ads — that egg freezing is empowering to women — is examined. The paper concludes that a more balanced approach to the risks and benefits of OC is necessary to truly respect women's autonomy. Moreover, justice requires us to look beyond a medical procedure accessible only to a minority of women in order to address inequities in the workplace. (shrink)

When the HPV vaccine was released over a decade ago, there was intense opposition to mandating the vaccine, including among bioethics and legal scholars. Some of the original concerns are now obsolete, while other objections continue to present an obstacle to mandating the vaccine. This essay responds to earlier critiques of mandatory HPV vaccination and offers a series of arguments in support of a vaccine mandate. The first section briefly addresses initial concerns that are no longer relevant. The second section (...) makes the ethical case for mandating HPV vaccination, based on three principles: 1) the best interests of children, 2) solidarity, and 3) health equity. The final section addresses concerns related to implementation of the vaccine, including the validity of linking vaccination to school entry. The essay concludes that we have a moral imperative to protect children from the leading cause of cervical cancer, and that mandating HPV vaccination is the best way to ensure that children of all backgrounds receive the vaccine before they have been exposed to the virus. (shrink)

Modern military organizations are paternalistic organizations. They typically recognize a duty of care toward military personnel and are willing to ignore or violate the consent of military personnel in order to uphold that duty of care. In this paper, we consider the case for paternalism in the military and distinguish it from the case for paternalism in medicine. We argue that one can consistently reject paternalism in medicine but uphold paternalism in the military. We consider two well-known arguments for the (...) conclusion that military organizations should not be entitled to use experimental drugs on troops without first obtaining the informed consent of those troops. We argue that both of these are unsuccessful, in the absence of an argument for the rejection of paternalism in the military altogether. The case for military paternalism is widely accepted. However, we consider three ways in which it could be challenged. (shrink)

Using the 1979-2006 waves of the National Longitudinal Survey of Youth, we investigate how the earnings bonus for fatherhood varies by characteristics associated with hegemonic masculinity in the American workplace: heterosexual marital status, professional/managerial status, educational attainment, skill demands of jobs, and race/ethnicity. We find the earnings bonus for fatherhood persists after controlling for an array of differences, including human capital, labor supply, family structure, and wives’ employment status. Moreover, consistent with predictions from the theory of hegemonic masculinity within bureaucratic (...) organizations, the fatherhood bonus is significantly larger for men with other markers of workplace hegemonic masculinity. Men who are white, married, in households with a traditional gender division of labor, college graduates, professional/managerial workers and whose jobs emphasize cognitive skills and deemphasize physical strength receive the largest fatherhood earnings bonuses. (shrink)

In the law of rape, consent has been and remains a gendered concept. Consent presumes female acquiescence to male sexual initiation. It presumes a man desires to penetrate a woman sexually. It presumes the woman willingly yields to the man's desires. It does not presume, and of course does not require, female sexual desire. Consent is what the law calls it when he advances and she does not put up a fight. I have argued elsewhere that the kind of thin (...) consent that the law focuses on is not enough ethically and it should not be enough legally to justify sexual penetration. I advocate sexual negotiation, where individuals discuss sexual desires and boundaries and agree to engage in penetration before it occurs, except under circumstances in which the partners have a reasonable basis to assess one another's nonverbal behavior. I argue that not only is verbal consultation about desire ordinarily ethically necessary before most acts of sexual penetration, it should be legally required. Consultation to ascertain sexual desires and boundaries assures that both parties desire penetration. (shrink)

We would like to thank the authors of the excellent Open Peer Commentaries on our target article, “Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Ge...

Using data from the 1979 to 1998 waves of the National Longitudinal Survey of Youth, the author explores how gender, family, and class alter the impact of self-employment on earnings. Fixed-effect regression results show that while self-employment positively influences men’s earnings, not all women similarly benefit. Professionals receive the same self-employment earnings premium, regardless of gender. However, self-employment in nonprofessional occupations negatively affects women’s earnings, with wives and mothers incurring the greatest penalties. The high concentration of nonprofessional self-employed women in (...) child care accounts for much of these penalties. Results are robust despite inclusion of controls for human capital and labor supply, job characteristics, occupational and industrial gender segregation, and demographic characteristics. The compensating differentials argument, that women with greater family responsibilities trade earnings for the family-friendly aspects of self-employment, is discussed in light of these findings. While this argument may explain women’s returns to nonprofessional self-employment, it is less persuasive for interpreting women’s returns to professional self-employment. (shrink)

Work—family policy strategies reflect gendered assumptions about the roles of men and women within families and therefore may lead to significantly different outcomes, particularly for families headed by single mothers. The authors argue that welfare states have adopted strategies based on different assumptions about women's and men's roles in society, which then affect women's chances of living in poverty cross-nationally. The authors examine how various strategies are associated with poverty rates across groups of women and also examine more directly the (...) effects of specific work—family policies on poverty rates. They find that while family benefits and child care for young children unequivocally lower poverty rates, particularly for families headed by a single mother, long parental leaves have more ambivalent effects. The findings suggest that it is critical to examine the gendered assumptions underlying work—family policies rather than viewing all work—family policies as the same. (shrink)

PurposeTo examine the contribution of “values-based reasoning” in evaluating older adults’ capacity to make medical decisions.Design and MethodsOlder men with schizophrenia (n=20) or dementia (n=20), and a primary care comparison group (n=19), completed cognitive and psychiatric screening and an interview to determine their capacity to make medical decisions, which included a component on values. All of the participants were receiving treatment at Veterans Administration (VA) outpatient clinics.ResultsParticipants varied widely in the activities and relationships they most valued, the extent to which (...) religious beliefs would influence healthcare decisions, and in ratings of the importance of preserving quality versus length of life. Most participants preferred shared decision making with doctor, family, or both. Individuals with schizophrenia or dementia performed worse than a primary care comparison group in reasoning measured by the ability to list risks and benefits and compare choices. Individuals with dementia performed comparably to the primary care group in reasoning measured by the ability to justify choices in terms of valued abilities or activities, whereas individuals with schizophrenia performed relatively worse compared to the other two groups. Compared to primary care patients, participants with schizophrenia and with dementia were impaired on the ability to explain treatment choices in terms of valued relationships.ConclusionMedical decision making may be influenced by strongly held values and beliefs, emotions, and long life experience. To date, these issues have not been explicitly included in structured evaluations of medical decision-making capacity. This study demonstrated that it is possible to inquire of and elicit a range of healthcare related values and preferences from older adults with dementia or schizophrenia, and individuals with mild to moderate dementia may be able to discuss healthcare options in relation to their values. However, how best to incorporate a values assessment into a structured capacity evaluation deserves further research attention. (shrink)

The present study examined the neural substrate of two classes of quantifiers: numerical quantifiers like ” at least three” which require magnitude processing, and logical quantifiers like ” some” which can be understood using a simple form of perceptual logic. We assessed these distinct classes of quantifiers with converging observations from two sources: functional imaging data from healthy adults, and behavioral and structural data from patients with corticobasal degeneration who have acalculia. Our findings are consistent with the claim that numerical (...) quantifier comprehension depends on a lateral parietal-dorsolateral prefrontal network, but logical quantifier comprehension depends instead on a rostral medial prefrontal-posterior cingulate network. These observations emphasize the important contribution of abstract number knowledge to the meaning of numerical quantifiers in semantic memory and the potential role of a logic-based evaluation in the service of non-numerical quantifiers. (shrink)

This book is addresses a topic that has received little or no attention in orthodox epistemology. Typical epistemological investigation focuses almost exclusively on knowledge, where knowing that something is the case importantly implies that what is believed is strictly true. This condition on knowledge is known as factivity and it is, to be sure, a bit of epistemological orthodoxy. So, if a belief is to qualify as knowledge according to the orthodox view it cannot be false. There is also an (...) increasingly influential group of epistemologists who argue that one ought to act only on what one knows, because truth of belief is the surest way to guarantee that our actions work out as planned. They defend what is known as the knowledge norm for action. This view is typically justified in virtue of the idea that successful intentional action should stem from knowledge because knowledge is a factive propositional attitude and it is, as a result, success-prone with respect to intentional action. In other words, true beliefs that constitute knowledge are the rationally normative standard for successful acting. But, there are clearly multitudes of cases where epistemic agents operate successfully and even rationally on the basis of beliefs that are false. That this is the case is not especially controversial. Sometimes false beliefs facilitate successful action. Of course, this can be because the agent is simply lucky. However, there is something particularly important about some false beliefs that relates to successful action but not in virtue of luck. While not strictly true, the beliefs in question are close to the truth or approximately true. This gives rise to the possibility that there are knowledge-like states that play roles very similar to knowledge but which are only quasi-factive. That is to say such states imply approximate truth and do not imply strict truth. Moreover, often such beliefs facilitate successful action in virtue of their being approximately true and this suggests a much more plausible norm for successful action that encompasses both cases of rational action guided by such quasi-factive states as well as cases of rational action guided by knowledge. The thesis of this book is that quasi-factive knowledge-like states are far more common that epistemologists have acknowledge and the book introduces a theory of such states and how they give rise to a much more reasonable account of the norms for action. This involves some tricky issues concerning approximate truth, the rationality of believing not strictly true claims, the justification of approximately true beliefs, the nature of false but approximately true evidence, the norms of belief, knowledge and quasi-knowledge, etc. (shrink)