Maya J. Goldenberg

Background Policy decisions about childhood vaccination require consideration of multiple, sometimes conflicting, public health and ethical imperatives. Examples of these decisions are whether vaccination should be mandatory and, if so, whether to allow for non-medical exemptions. In this article we argue that these policy decisions go beyond typical public health mandates and therefore require democratic input.Methods We report on the design, implementation, and results of a deliberative public forum convened over four days in Ontario, Canada, on the topic of childhood vaccination.Results 25 participants completed all four days of deliberation and collectively developed 20 policy recommendations on issues relating to mandatory vaccinations and exemptions, communication about vaccines and vaccination, and AEFI (adverse events following immunization) compensation and reporting. Notable recommendations include unanimous support for mandatory childhood vaccination in Ontario, the need for broad educational communication about vaccination, and the development of a no-fault compensation scheme for AEFIs. There was persistent disagreement among deliberants about the form of exemptions from vaccination (conscience, religious beliefs) that should be permissible, as well as appropriate consequences if parents do not vaccinate their children.Conclusions We conclude that conducting deliberative democratic processes on topics that are polarizing and controversial is viable and should be further developed and implemented to support democratically legitimate and trustworthy policy about childhood vaccination.

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.

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...

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...

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...

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.

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.

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.

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...

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.

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

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.

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'.

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.

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.

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.