In this essay I think about the ways in which orientation towards the future plays a central role in constituting meaningful lives. Much intellectual work on the nature of persons takes our existence as something given and static, and much of it treats persons as either isolated individuals, or as completely subsumed within a social identity. However, we are both, and neither; we are always individuals, and we are always social creatures, and yet we are never fully either of these. (...) Understanding who and what we are in each of these ways reveals something important, but each understanding also reduces us and limits our self-comprehension in dangerous ways. In response I suggest that we refashion the notion of "hope " as an act of subjective faith and self-creation, and as anorientation only possible within free and loving human communities. Perhaps this is willfully naive, but without hope it seems we will drift, or be driven, and our lives will fail to be ours. (shrink)

In this essay I think about the ways in which orientation towards the future plays a central role in constituting meaningful lives. Much intellectual work on the nature of persons takes our existence as something given and static, and much of it treats persons as either isolated individuals, or as completely subsumed within a social identity. However, we are both, and neither; we are always individuals, and we are always social creatures, and yet we are never fully either of these. (...) Understanding who and what we are in each of these ways reveals something important, but each understanding also reduces us and limits our self-comprehension in dangerous ways. In response I suggest that we refashion the notion of "hope " as an act of subjective faith and self-creation, and as anorientation only possible within free and loving human communities. Perhaps this is willfully naive, but without hope it seems we will drift, or be driven, and our lives will fail to be ours. (shrink)

The work of Jacques Ellul is useful in understanding and evaluating the implications of rapidly changing technologies for human values and democracy. Ellul developed three powerful theses about technology: technological autonomy, technological determinism, and technological bluff. In this essay, the authors explicate these views of technology, and place the work of Ellul in dialogue with the ides of other important theorists of technology. Ellul’s too-often overlooked theses about technology are relevant to our present technological society.

In this paper we try to provide the beginning of an analysis of some of the crises of our time. We do so by arguing that a certain account of the individual blocks our ability to think about solutions at the individual and the social levels. As an example we take the industrialization of housework in the United States and its effects on women’s identity and on notions of “home.” We suggest that the rise of liberal individualism, the industrialization of (...) public and private life, and the predomination of capitalism are central to the disintegration of the individual/self, and that they limit the possiblities of some to determine the content, and direction of self change. We argue that a notion of self as integrated and in process is needed in order to address our rapidly changing world. (shrink)

The public rejection of scientific claims is widely recognized by scientific and governmental institutions to be threatening to modern democratic societies. Intense conflict between science and the public over diverse health and environmental issues have invited speculation by concerned officials regarding both the source of and the solution to the problem of public resistance towards scientific and policy positions on such hot-button issues as global warming, genetically modified crops, environmental toxins, and nuclear waste disposal. The London Royal Society’s influential report (...) “Public Understanding of Science”, which spearheaded the now-thriving area of science... (shrink)

The evidence-based medicine (EBM) movement is touted as a new paradigm in medical education and practice, a description that carries with it an enthusiasm for science that has not been seen since logical positivism flourished (circa 1920–1950). At the same time, the term ‘‘evidence-based medicine’’ has a ring of obviousness to it, as few physicians, one suspects, would claim that they do not attempt to base their clinical decision-making on available evidence. However, the apparent obviousness of EBM can and should (...) be challenged on the grounds of how ‘evidence’ has been problematised in the philosophy of science. EBM enthusiasm, it follows, ought to be tempered. The post-positivist, feminist, and phenomenological philosophies of science that are examined in this paper contest the seemingly unproblematic nature of evidence that underlies EBM by emphasizing different features of the social nature of science. The appeal to the authority of evidence that characterizes evidence-based practices does not increase objectivity but rather obscures the subjective elements that inescapably enter all forms of human inquiry. The seeming common sense of EBM only occurs because of its assumed removal from the social context of medical practice. In the current age where the institutional power of medicine is suspect, a model that represents biomedicine as politically disinterested or merely scientific should give pause. (shrink)

Refiguring Critical Theory offers some thoughts about the nature of democracy and the possibilities of individual and collective self-determination. The text traces theories of the relationship between being and consciousness from Marx through Lukacs and the Frankfurt School to Habermas' recent work The Theory of Communicative Action.

We compare a “Mach-Zehnder interferometer in time” for cold neutrons with its well-known spatial counterpart and demonstrate the intimate connection between space and time for both setups. Further, we outline a combined space-time interferometer, which coherently splits a wavepacket in longitudinal and lateral direction. On the way towards time interferometry “neutron computer holography” seems to be an attractive application. It allows the three-dimensional reconstruction of an object from the scattered intensity, but in contrast to holography with light, there is no (...) need for a reference wave. On the other hand, the possible resolution is worse than in the light case. (shrink)

Because “evidence” is at issue in evidence-based medicine (EBM), the critical responses to the movement have taken up themes from post-positivist philosophy of science to demonstrate the untenability of the objectivist account of evidence. While these post-positivist critiques seem largely correct, I propose that when they focus their analyses on what counts as evidence, the critics miss important and desirable pragmatic features of the evidence-based approach. This article redirects critical attention toward EBM’s rigid hierarchy of evidence as the culprit of (...) its objectionable epistemic practices. It reframes the EBM discourse in light of a distinction between objectivist and pragmatic epistemology, which allows for a more nuanced analysis of EBM than previously offered: one that is not either/or in its evaluation of the decision-making technology as either iconoclastic or creedal. -/- . (shrink)

While most of healthcare research and practice fully endorses evidence-based healthcare, a minority view borrows popular themes from philosophy of science like underdetermination and value-ladenness to question the legitimacy of the evidence-based movement’s philosophical underpinnings. While the feminist origins go unacknowledged, those critics adopt a feminist reading of the “gap argument” to challenge the perceived objectivism of evidence-based practice. From there, the critics seem to despair over the “subjective elements” that values introduce to clinical reasoning, demonstrating that they do not (...) subscribe to feminist science studies’ normative program——where contextual values can enable good science and justified decisions. In this paper, I investigate why it is that the critics of evidence-based medicine adopt feminist science’s characterization of the problem but resist the productive solutions offered by those same theorists. I suggest that the common feminist empiricist appeal to idealized epistemic communities is impractical for those working within the current biomedical context and instead offer an alternate stream of feminist research into the empirical content of values (found in the work of Elizabeth Anderson and Sharyn Clough) as a more helpful recourse for facilitating the important task of legitimate and justified clinical decision-making. I use a case study on clinical decision-making to illustrate the fruitfulness of the latter feminist empiricist framework. -/- See response by Sharyn Clough: http://wp.me/p1Bfg0-1aN See reply by Maya Goldenberg: http://wp.me/p1Bfg0-1oY. (shrink)

Background The increase in empirical methods of research in bioethics over the last two decades is typically perceived as a welcomed broadening of the discipline, with increased integration of social and life scientists into the field and ethics consultants into the clinical setting, however it also represents a loss of confidence in the typical normative and analytic methods of bioethics. Discussion The recent incipiency of "Evidence-Based Ethics" attests to this phenomenon and should be rejected as a solution to the current (...) ambivalence toward the normative resolution of moral problems in a pluralistic society. While "evidence-based" is typically read in medicine and other life and social sciences as the empirically-adequate standard of reasonable practice and a means for increasing certainty, I propose that the evidence-based movement in fact gains consensus by displacing normative discourse with aggregate or statistically-derived empirical evidence as the "bottom line". Therefore, along with wavering on the fact/value distinction, evidence-based ethics threatens bioethics' normative mandate. The appeal of the evidence-based approach is that it offers a means of negotiating the demands of moral pluralism. Rather than appealing to explicit values that are likely not shared by all, "the evidence" is proposed to adjudicate between competing claims. Quantified measures are notably more "neutral" and democratic than liberal markers like "species normal functioning". Yet the positivist notion that claims stand or fall in light of the evidence is untenable; furthermore, the legacy of positivism entails the quieting of empirically non-verifiable considerations like moral claims and judgments. As a result, evidence-based ethics proposes to operate with the implicit normativity that accompanies the production and presentation of all biomedical and scientific facts unchecked. Summary The "empirical turn" in bioethics signals a need for reconsideration of the methods used for moral evaluation and resolution, however the options should not include obscuring normative content by seemingly neutral technical measure. (shrink)

BackgroundThe increase in empirical methods of research in bioethics over the last two decades is typically perceived as a welcomed broadening of the discipline, with increased integration of social and life scientists into the field and ethics consultants into the clinical setting, however it also represents a loss of confidence in the typical normative and analytic methods of bioethics.DiscussionThe recent incipiency of "Evidence-Based Ethics" attests to this phenomenon and should be rejected as a solution to the current ambivalence toward the (...) normative resolution of moral problems in a pluralistic society. While "evidence-based" is typically read in medicine and other life and social sciences as the empirically-adequate standard of reasonable practice and a means for increasing certainty, I propose that the evidence-based movement in fact gains consensus by displacing normative discourse with aggregate or statistically-derived empirical evidence as the "bottom line". Therefore, along with wavering on the fact/value distinction, evidence-based ethics threatens bioethics' normative mandate. The appeal of the evidence-based approach is that it offers a means of negotiating the demands of moral pluralism. Rather than appealing to explicit values that are likely not shared by all, "the evidence" is proposed to adjudicate between competing claims. Quantified measures are notably more "neutral" and democratic than liberal markers like "species normal functioning". Yet the positivist notion that claims stand or fall in light of the evidence is untenable; furthermore, the legacy of positivism entails the quieting of empirically non-verifiable (or at least non-falsifiable) considerations like moral claims and judgments. As a result, evidence-based ethics proposes to operate with the implicit normativity that accompanies the production and presentation of all biomedical and scientific facts unchecked.SummaryThe "empirical turn" in bioethics signals a need for reconsideration of the methods used for moral evaluation and resolution, however the options should not include obscuring normative content by seemingly neutral technical measure. (shrink)

With twentieth- and twenty-first-century philosophy of science’s unfolding acceptance of the nature of scientific inquiry being value-laden, the persistent worry has been that there are no means for legitimate negotiation of the social or non-epistemic values that enter into science. The rejection of the value-free ideal in science has thereby been coupled with the spectres of indiscriminate relativism and bias in scientific inquiry. I challenge this view in the context of recently expressed concerns regarding Canada's death of evidence controversy. The (...) worry, raised by Stathis Psillos, is that as constructivist accounts of science demoted the previously secure status of evidence for drawing justified conclusions in science, we were left with no rational delineation between the right and wrong values for science. The implication for the death of evidence controversy is that we may have no rational grounds for claiming that the Canadian Government is wrong to interfere with scientific enterprise. But he does offer another avenue for reaching the conclusion that the wrong social values are directing the current stifling of some sectors of Canadian science. Psillos draws from standpoint epistemologies to devise a salient defence of ‘valuing evidence’ as a universalizable social value. That is, government bodies ought to enable scientific research via adequate funding as well as political non-interference. In this paper, I counter that non-epistemic values can be rationally evaluated and that standpoint epistemology’s universalizable standpoint provides an inadequate framework for negotiating social values in science. Regarding, I draw from the evidence-based medicine debate in philosophy of medicine and from feminist empiricist investigations into the science–values relationship in order to make the argument for empirically driven value arbitration. If social values can be rationally chosen in the context of justification, then we can have grounds for charging the Canadian leadership with being ‘at war with science’. I further argue that my recommended empiricist methodology is preferable to Psillos’s search for universalizable perspectives for negotiating social values in science because the latter method permits little more than the trivial conclusion that evidence is valuable to science. (shrink)

In Clough’s reply paper to me (http://wp.me/p1Bfg0-1aN), she laments how feminist calls for diversity within scientific communities are inadvertently sidelined by our shared feminist empiricist prescriptions. She offers a novel justification for diversity within epistemic communities and challenges me to accept this addendum to my prior prescriptions for biomedical research communities (Goldenberg 2013) on the grounds that they are consistent with the epistemic commitments that I already endorse. In this response, I evaluate and accept her challenge.

The precondition of any feminist politics – a usable category of ‘woman’ – has proved to be difficult to construct, even proposed to be impossible, given the ‘problem of exclusion’. This is the inevitable exclusion of at least some women, as their lives or experiences do not fit into the necessary and sufficient condition(s) that denotes group membership. In this paper, I propose that the problem of exclusion arises not because of inappropriate category membership criteria, but because of the presumption (...) that categories can only be organised by identity relations or shared properties among their members. This criterion of sameness as well as the characterisation of this exclusion as essentialism attests to a metaphysics that is not conducive to resistance and liberatory projects. Following a strain of hybrid thinking in feminist and post-colonial theory, I outline an alternative pluralist logic that confronts oppressive binaries that impede theory work in gender, sexuality, and race theory, and limit political action and resistance. The problem of exclusion is neither irresolvable nor is it essentialism. Instead it is a denial of subjectivity due to pseudodualistic self/Other dichotomies that can be resisted by adopting a new categorial logic. While this paper focuses on the specific problem of formulating a category of ‘woman’, it has implications for other areas of gender, critical race, and postcolonial theory. Rather than working toward an inclusive category founded on sameness, theorists need to develop independent and positive categories grounded in difference. Our current categorial logic does not permit such a project, and therefore a new metaphysics must be adopted. (shrink)

The once animated efforts in medical phenomenology to integrate the art and science of medicine (or to humanize scientific medicine) have fallen out of philosophical fashion. Yet the current competing medical discourses of evidencebased medicine and patient-centered care suggest that this theoretical endeavor requires renewed attention. In this paper, I attempt to enliven the debate by discussing theoretical weaknesses in the way the “lived body” has operated in the medical phenomenology literature—the problem of the absent body—and highlight how evidence-based medicine (...) has refigured medical phenomenology’s historical nemesis, “biomedicine.” What we now need is a phenomenology of the embodied subject in the age of evidence-based medicine. (shrink)

It has been almost 20 years since the field of bioethics was galvanized by a controversial series of multinational AZT trials employing placebo controls on pregnant HIV-positive women in the developing world even though a standard of care existed in the sponsor countries. The trove of ethical investigations that followed was thoughtful and challenging, yet an important and problematic methodological assumption was left unexplored. In this article, I revisit the famous “double standard of care” case study in order to offer (...) novel consideration of the placebo orthodoxy that underlies much of the ethical debate. This majority view found in medical research is that placebo-controlled trials are methodologically superior to comparative trials that use active controls. I challenge this orthodoxy and argue that lives were unnecessarily lost in these trials as a result. Furthermore, current HIV research on vaccines and microbicides is now poised to repeat the error of subscribing to the placebo orthodoxy. (shrink)

As sharing and secondary research use of biospecimens increases, IRBs and researchers face the challenge of protecting and respecting donors without comprehensive regulations addressing the human subject protection issues posed by biobanking. Variation in IRB biobanking policies about these issues has not been well documented.

Because few would object to evidence-based medicine’s (EBM) principal task of basing medical decisionmaking on the most judicious and up-to-date evidence, the debate over this prolific movement may seem puzzling. Who, one may ask, could be against evidence (Carr-Hill, 2006)? Yet this question belies the sophistication of the evidence-based movement. This chapter presents the evidence-based approach as a socio-medical phenomenon and seeks to explain and negotiate the points of disagreement between supporters and detractors. This is done by casting EBM as (...) more than the simple application of research findings to clinical care and improved health outcomes, but rather an umbrella term that harnesses a specific set of pedagogical objectives (some rather radical) under a name that makes it difficult to argue against. (shrink)

We live in an age of evidence-based healthcare, where the concept of evidence has been avidly and often uncritically embraced as a symbol of legitimacy, truth, and justice. By letting the evidence dictate healthcare decision making from the bedside to the policy level, the normative claims that inform decision making appear to be negotiated fairly—without subjectivity, prejudice, or bias. Thus, the term ‘‘evidence-based’’ is typically read in the health sciences as the empirically adequate standard of reasonable practice and a means (...) for increasing certainty. Supporters believe that evidence-based medicine (EBM) can introduce rational order to the deliberative processes of healthcare decision making. It is perhaps puzzling, then, to come across critical perspectives (typically arising from the humanities and the more theory-driven social sciences) raising concerns about a seeming technogovernance being introduced by this deferral to the evidence where power interests can be obfuscated by way of technical resolve. The critics holding this minority view argue that technological solutions to problems of knowledge and practice cannot replace medicine’s normative content. Against EBM’s democratic leanings toward transparency and accountability, medical criteria alone cannot decide valueladen ethically charged decisions. This paper attempts to explain and evaluate this important debate in the philosophy of medicine, focusing specifically on the dispute over 'evidence-based women's health'. (shrink)

As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...) Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (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)

As the quality movement in health care now enters its fourth decade, the language of quality is ubiquitous. Practitioners, organizations, and government agencies alike vociferously testify their commitments to quality and accept numerous forms of governance aimed at improving quality of care. Remarkably, the powerful phrase ‘‘quality of care’’ is rarely defined in the health care literature. Instead it operates as an accepted and assumed goal worth pursuing. The status of evidence-based medicine, for instance, hinges on its ability to improve (...) quality of care, and efforts are made by both proponents and detractors to unpack the contents and outcomes of evidence-based practice while the contents of ‘‘quality of care’’ are presumed to be understood. Because the goals of medicine are far from obvious, this paper investigates the neglected term, ‘‘quality of care,’’ in an effort to understand what it is that health care practices are so uncritically assumed to be striving for. Finding lack of consensus on the terminology in the quality literature, I propose that the term operates rhetorically by way of persuasive appeal (and lack of descriptive meaning). Unsatisfied that ‘‘quality of care’’ operates as a mere buzzword in morally contentious debates over resource allocation and duties of care, I implore health care communities to go beyond mere commitments to quality and, instead, to focus attention on the difficult task of specifying what counts as quality care within an economically constrained health care system. (shrink)

Medical discourse currently manages two broad visionary movements: "evidence-based medicine," the effort to make clinical medicine more responsive to the medical research, and "patient-centered care," the platform for a more humane health-care encounter. There have been strong calls to synthesize the two as "evidence-based patient-centred care" (Lacy and Backer 2008; see also Borgmeyer 2005; Baumann, Lewis, and Gutterman 2007; Krahn and Naglie 2008), yet many question the compatibility of the two competing programs.This might sound to some like a new version (...) of an old story. Despite the fact that evidence-based medicine and patient-centered care are relatively new programs, the story of their oppositional .. (shrink)

It is a thrill to have two scholars whom I admire greatly commenting on my own work. I want to thank Professors Miriam Solomon and Inmaculada de Melo-Martin for their careful reading and attention to the book. I found their positive evaluation of the research very encouraging and still both commentaries offer critical challenges that warrant attention. This response will address two points of discussion: normative theorizing on trust; whether the conceptual resources, specifically the crisis of trust framework, can address (...) the present situation of COVID vaccine hesitancy.Solomon and de Melo-Martin question the limited attention I give to evaluating the propositional claims and the... (shrink)

This paper examines the conclusions that one must draw from the finding that there are values in science. The value-ladenness of scientific claims puts the nature and role of empirical evidence into question, as seen in recent discussions in the philosophy of medicine regarding evidence-based medicine and feminist science studies, which maintains the normativity of its feminist claims. Within the critical literature and debates surrounding evidence-based medicine (EBM), one finds a championing of the lessons learned from post-positivist science studies: the (...) evidence-based effort to ground medical decision-making in the most rigorous sources of scientific evidence obscures the social values that necessarily enter into all decision-making contexts, the complex social context of clinical practice being no exception. The critics of EBM claim that to try to derive a formal methodology governed by pre-established rules, guidelines, and hierarchies of information misplaces the contextual and social features of biomedical knowledge and practice, thereby obscuring the power interests that so problematically dictate large factions of biomedical research and practice. Yet possible relativist implications follow from this finding, and we find that the EBM critics amply criticize EBM’s tacit theory of evidence, but then fail to formulate a constructive alternative theory of evidence within this fact-value interplay. After overviewing some such criticisms of evidence-based medicine, I turn to contemporary critical science studies, especially the feminist empiricism of Lynn Hankinson Nelson and Helen Longino, for workable alternative theories of evidence within a framework of normative scientific claims. I will suggest these theories fail to guide medical decision-making because of some undesirable consequences of Quinean fact-value holism: the denial that our values have logical content and are therefore not empirically examinable relativises even these nuanced conceptions of evidence. A naturalized look at how facts and values actually interact in medical decision-making suggests that this fact/value holism is not realistic. I provide an illustrative example of a physician devising a treatment recommendation for a patient to demonstrate that in practice, facts and values intermingle in the decision-making process without indeterminacy and subsequent appeals to moral and political frameworks, as feminist empiricism suggests. In the end, value-laden evidence can retain its adjudicative force and normativity. (shrink)

MA Thesis. Biomedical ethics does not lend itself to easy categorisation as either a 'theoretical' or a 'practical' enterprise because inquiry into the quandaries of morality requires both situational and 'translocal' perspectives. These types of investigation bring into question the legitimacy of the theory/practice divide that has dominated intellectual thought since antiquity. This division hinders the development of bioethics by fostering internal dispute within the discipline regarding appropriate methodology and the practice of clinical ethics. In this thesis, I argue that (...) much of these disciplinary disjunctions are due to an undue labeling of bioethics as either 'applied ethics' or 'practical ethics', and a failure to recognise the intricate way in which theory and practice inform each other and are integral and interrelated parts of moral deliberation. I argue for an integration of the theory and practice of bioethics. (shrink)

Is it enough? Reflecting on a prepandemic monograph on vaccine hesitancy two years into the COVID-19 pandemic demands answer to the questions whether the analysis still holds and whether it offers sufficient resources to address the current situation. Maya J. Goldenberg's Vaccine Hesitancy: Public Trust, Expertise, and the War on Science argues that vaccines are about much more than vaccines, and vaccine hesitancy reflects the cultural anxieties of the moment. The global attention and geopolitical reach of COVID-19 vaccination has (...) further elevated vaccines as an outsized symbol of this political moment of sharp polarization, conflict... (shrink)

The metabolic organization of both normal and malignant prostate cellular phenotypes involves some unusual and surprising features. In particular, both conditions exhibit ratios of NADH/NAD+ and NADPH/NADP+ charactersitic of high oxidative states despite a chronic shortage of O2 in both conditions. In this paper, we observe that, in prostate cancer cells, the oxidizing power of the fatty acid synthesis (FAS) pathway is so large that redox is stabilized more favorably (more oxidized) than in normal prostate cells. This FAS‐facilitated redox improvement (...) occurs despite the fact that malignant cells are more O2 limited and therefore express more hypoxia inducible factor 1 (HIF1) and express hypoxia‐regulated genes more robustly. This unusual metabolic situation clearly separates direct regulatory effects of redox balance from secondary effects of hypoxia per se. The physiological significance of the FAS pathway is thus the harnessing of its oxidizing power for improving redox balance despite conditions of more extreme hypoxia. Similar hypoxia defense strategies are found in animal species that are unusually tolerant to oxygen lack. Our hypothesis is that the metabolic organization in the “low zinc, low citrate” phenotype reflects an hypoxia‐defense adaptation geared toward redox balance, with prostate cancer cells being relatively more oxidized, even if more hypoxic, than normal prostate cells. Recognition and understanding of these redox balancing and hypoxia defense functions may lead to new intervention strategies by developing new intracellular targets for prostate cancer therapy. BioEssays 24:749–757, 2002. © 2002 Wiley Periodicals, Inc. (shrink)

With unexpectedly good timing, I published a monograph on vaccine hesitancy in March 2021, just as COVID vaccine rollouts were reaching full steam in high income countries, including my own. My years of research and writing were near completion when the SARS-CoV-2 virus was first identified; my focus was on parents' hesitancy over routine childhood vaccinations. Vaccine hesitancy in industrialized nations has been intensely studied by social and behavioral scientists and was the subject of considerable media commentary and popular science (...) writing up until COVID vaccine hesitancy redirected that energy. Past knowledge informs current understanding, and I proposed a shift in characterizing... (shrink)

The once animated efforts in medical phenomenology to integrate the art and

science of medicine (or to humanize scientific medicine) have fallen out of philosophical fashion. Yet the current competing medical discourses of evidencebased medicine and patient-centered care suggest that this theoretical endeavor requires renewed attention. In this paper, I attempt to enliven the debate by discussing theoretical weaknesses in the way the “lived body” has operated in the medical phenomenology literature—the problem of the absent body—and highlight how evidence-based medicine has (...) refigured medical phenomenology’s historical nemesis, “biomedicine.” What we now need is a phenomenology of the embodied subject in the age of evidence-based medicine. (shrink)

There may be compelling reasons to return to parents a limited subset of results from research conducted using residual newborn screening dried blood samples. This article explores the circumstances under which research results might be returned, as well as the mechanisms by which state newborn screening programs might facilitate the return of research results. The scope of any responsibility to return results of research conducted using DBS should be assessed in light of the potential impact on the primary mission of (...) state newborn screening programs. (shrink)

The COVID-19 pandemic has resulted in widespread disruption of the typical way of doing things. In nearly every industry, responses to the pandemic have brought about departures from standard opera...

In the article, “Precision Medicine for Whom? Public Health Outputs from “Genomics England” and “All of Us” to Make Up for Upstream and Downstream Exclusion,” Galasso focuses on how marginalized pe...

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease (...) can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges. (shrink)

Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap (...) by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (shrink)