Inmaculada de Melo-Martin

During emerging public health crises, both policymakers and members of the public are looking to scientific experts to provide guidance. Even in cases where there are significant uncertainties, there is pressure for experts to “speak with one voice” to avoid confusion, allow officials to make evidence-based decisions rapidly, and encourage public support for such decisions. This can lead experts to engage in masking of information about the state of the science or regarding assumptions involved in policy recommendations. Although experts might have good reasons for masking disagreements, uncertainties, or assumptions when offering policy advice, we argue that this strategy can result in epistemic harms. Using the case of the COVID-19 pandemic, we show that public health authorities masked two types of information necessary for laypersons to evaluate public health recommendations: (1) experts’ disagreements about the scientific evidence and (2) the role of values in making inferences from the science to policy positions. We contend that this resulted in epistemic harms against laypeople that provide a pro tanto case against masking information. We further argue that when the science is in flux and policies need to be implemented despite significant uncertainties, there is an all-things-considered case against masking the types of information discussed.

The growing commercialization of science has raised concerns about financial conflicts of interest (COIs). Evidence suggests that such conflicts threaten the integrity of research and the well-being of research participants. Trying to minimize these negative effects, federal agencies, academic institutions, and publishers have developed conflict-of-interest policies. Among such policies, recommendations or requirements to disclose financial COIs to potential research participants and patients have become commonplace. Here, I argue that disclosing conflicts of interest to potential research participants fails to achieve the weighty moral goals that presumably ground such policies. This is so either because disclosure is simply a wrong means for achieving some of the goals in question or because, although disclosure could be an appropriate means for some of those goals, the way in which it is implemented prevents fulfillment of the desirable moral aim.

Philosophers of science, particularly those working on science and values, often talk about the need for science to be socially responsible. However, what this means is not clear. In this paper, we review the contributions of philosophers of science to the debate over socially responsible science and explore the dimensions that a fruitful account of socially responsible science should address. Our review shows that offering a comprehensive account is difficult. We contend that broad calls for socially responsible science that fail to attend to relevant dimensions are not the solution, as they preclude meaningful changes to research institutions and practices. We conclude that narrower, more explicit accounts are more likely to lead to substantive transformation.

When the COVID-19 surge hit New York City hospitals, the Division of Medical Ethics at Weill Cornell Medical College, and our affiliated ethics consultation services, faced waves of ethical issues sweeping forward with intensity and urgency. In this article, we describe our experience over an eight-week period (16 March through 10 May 2020), and describe three types of services: clinical ethics consultation (CEC); service practice communications/interventions (SPCI); and organizational ethics advisement (OEA). We tell this narrative through the prism of time, describing the evolution of ethical issues and trends as the pandemic unfolded. We delineate three phases: anticipation and preparation, crisis management, and reflection and adjustment. The first phase focused predominantly on ways to address impending resource shortages and to plan for remote ethics consultation, and CECs focused on code status discussions with surrogates. The second phase was characterized by the dramatic convergence of a rapid increase in the number of critically ill patients, a growing scarcity of resources, and the reassignment/ redeployment of staff outside their specialty areas. The third phase was characterized by the recognition that while the worst of the crisis was waning, its medium- and long-term consequences continued to pose immense challenges. We note that there were times during the crisis that serving in the role of clinical ethics consultant created a sense of dis-ease as novel as the coronavirus itself. In retrospect we learned that our activities far exceeded the familiar terrain of clinical ethics consultation and extended into other spheres of organizational life in novel ways that were unanticipated before this pandemic. To that end, we defined and categorized a middle level of ethics consultation, which we have termed service practice communication intervention (SPCI). This is an underappreciated dimension of the work that ethics consult services are capable of in times of crisis. We believe that the pandemic has revealed the many enduring ways that ethics consultation services can more robustly contribute to the ethical life of their institutions moving forward.

Several have argued that the aims of scientific research are not always independent of social and ethical values. Yet this is often assumed only to have implications for decisions about what is studied, or which research projects are funded, and not for methodological decisions or standards of evidence. Using the case of the recently developed HPV vaccines, we argue that the social aims of research can also play important roles in justifying decisions about (1) how research problems are defined in drug development, (2) evidentiary standards used in testing drug “success”, and (3) clinical trial methodology. As a result, attending to the social aims at stake in particular research contexts will produce more rational methodological decisions as well as more socially relevant science.

Dissent is thought to play a valuable role in science, so that scientific communities ought to create opportunities for receiving critical feedback and take dissenting views seriously. There is concern, however, that some dissent does more harm than good. Dissent on climate change and evolutionary theory, for example, has confused the public, created doubt about existing consensus, derailed public policy, and forced scientists to devote resources to respond. Are there limits to the extent to which scientific communities have obligations to seek and engage dissenting views? We consider the two main criteria that have been offered for what constitutes “normatively appropriate dissent” or the sort of dissent that ought to have the opportunity to be heard and taken seriously. Many have argued that dissenters must (1) engage in uptake of criticism against their own views and (2) share some standards for theory appraisal. We argue these criteria ultimately are unsuccessful.

Although there is increased recognition of the inevitable--and perhaps sometimes beneficial-- role of values in scientific inquiry, there are also growing concerns about the potential for commercial values to lead to bias. This is particularly evident in biomedical research. There is a concern that conflicts of interest created by commercialization may lead to biased reasoning or methodological choices in testing drugs and medical interventions. In addition, such interests may lead research in directions that are unresponsive to pressing social needs, when it is profitable to do so. Feminist philosophy of science seems particularly well situated to provide resources to help address such concerns because this literature has both 1) theorized about how to minimize biases in science, e.g., sexist or androcentric biases, and 2) generated accounts of objectivity that do not require individual scientists to be value-neutral or disinterested. Two such accounts are assessed in relation to concerns about commercial bias: those offered by feminist empiricism and standpoint feminism. We argue that standpoint feminism is more promising because it has resources to address, not just the epistemological, but also the inescapably ethical dimensions of commercial bias.

Despite increasing recognition of the ways in which ethical and social values play a role in science (Kitcher 2001; Longino 1990, 2002), scientists are often still reluctant to acknowledge or discuss ethical and social values at stake in their research. Even when research is closely connected to developing public policy, it is generally held that it should be empirical data, and not the values of scientists, that inform policy. According to this view, scientists need not, and should not, endorse non-epistemic values related to their research, as doing so may bias their assessment of what the evidence is. As a result, debates over science-based policy tend to be construed solely as empirical discussions to be ..

Recently, some have proposed moral bioenhancement as a solution to the serious moral evils that humans face. Seemingly disillusioned with traditional methods of moral education, proponents of bioenhancement believe that we should pursue and apply biotechnological means to morally enhance human beings. Such proposal has generated a lively debate about the permissibility of moral bioenhancement. We argue here that such debate is specious. The claim that moral bioenhancement is a solution - whether permissible or not - to the serious moral problems that affect human beings is based on several problematic framing assumptions. We evaluate here three of such assumptions: the first rests on a contested understanding of morality, the second consist in a mistaken conception of human moral problems, and the third relates to problematic presuppositions grounding the interpretation of existent scientific evidence presented to defend moral bioenhancement. Once these framing assumptions are identified and critically evaluated, it becomes clear that the moral bioenhancement debate is misguided.

Although science is our most reliable producer of knowledge, it can also be used to create ignorance, unjustified doubt, and misinformation. In doing so, agnotological practices result not only in epistemic harms but also in social ones. A way to prevent or minimise such harms is to impede these ignorance-producing practices. In this paper, I explore various challenges to such a proposal. I first argue that reliably identifying agnotological practices in a way that permits the prevention of relevant harms is more difficult than it might appear. I focus on an identifying criterion that many find apt for the task: bad faith motives. I then consider an objection—that reliable criteria are unnecessary to successfully address the concerns raised by agnotological strategies—and I show that it fails. I conclude by exploring other ways of conceptualising the problems attributed to agnotological practices. In particular, I challenge the focus on misinformation as the main problem of concern.

A significant amount of scientific evidence shows that childhood vaccination constitutes one of the most successful and cost-effective public health interventions of the last century. It has saved millions of lives. Nonetheless, many parents are reluctant or outright hostile to having their children vaccinated. Similarly, in spite of the fact that vaccines against SARS-CoV-2, the virus that causes COVID-19, are highly effective in protecting people against death and serious illness, about a third of adults in the United States are still unvaccinated as of July 2022. What leads people to be skeptical of vaccines or to refuse them altogether?The dominant narrative answering this...

Pregnant women are insistently urged to limit or eliminate risks to their fetuses. This is done even when the risks to fetuses are only theoretical or minimal, and the health and well-being of the pregnant woman is at stake. When using reproductive and reprogenetic technologies, however, evaluations about what risks are acceptable to impose on embryos change radically. In the context of these technologies, women are not only allowed to impose risks on embryos, but actively encouraged to do so-insofar as they can be urged to use these technologies for various reasons. This article explores the problematic beliefs and social norms regarding motherhood that shape these apparently inconsistent risk evaluations.

While various definitions of moral distress have been proposed, some agreement exists that it results from illegitimate constraints in clinical practice affecting healthcare professionals’ moral agency. If we are to reduce moral distress, instruments measuring it should provide relevant information about such illegitimate constraints. Unfortunately, existing instruments fail to do so. We discuss here several shortcomings of major instruments in use: their inability to determine whether reports of moral distress involve an accurate assessment of the requisite clinical and logistical facts in play, whether the distress in question is aptly characterized as moral, and whether the moral distress reported is an appropriate target of elimination. Such failures seriously limit the ability of empirical work on moral distress to foster appropriate change.

The use of genome embryo editing tools in reproduction is often touted as a way to ensure the birth of healthy and genetically related children. Many would agree that this is a worthy goal. The purpose of this paper is to argue that, if we are concerned with justice, accepting such goal as morally appropriate commits one to rejecting the development of embryo editing for reproductive purposes. This is so because safer and more effective means exist that can allow many more prospective parents to achieve the same valued goal and that offer additional benefits.

Aldehyde dehydrogenase 2 (ALDH2) deficiency constitutes one of the most common hereditary enzyme deficiencies, affecting 35% to 40% of East Asians and 8% of the world population. It causes the well-known Asian Alcohol Flush Syndrome, characterized by facial flushing, palpitation, tachycardia, nausea, and other unpleasant feelings when alcohol is consumed. It is also associated with a marked increase in the risk of a variety of serious disorders, including esophageal cancer and osteoporosis. Our recent studies with murine models have demonstrated that a one-time administration of an adeno-associated virus (AAV) gene transfer vector expressing the human ALDH2 coding sequence (AAVrh.10hALDH2) will correct the deficiency state and prevent alcohol-induced abnormalities of the esophagus and bone. If successful in humans, such strategy would reduce the increased risk-associated disorders such as esophageal cancer and osteoporosis, but also prevent the Asian Alcohol Flush Syndrome. This treatment thus raises ethical concerns: although it would potentially prevent fatal disease, it could also allow affected individuals to drink alcohol without suffering the Asian Alcohol Flush Syndrome and, hence, potentially enable personal destructive behavior. Here we explore the ethical arguments against the development of a gene therapy for ALDH2 deficiency and we find them wanting. We contend that development of such treatments is ethically appropriate and should be part and parcel of the solutions offered against the condition.

An increase in global violence has forced the displacement of more than 70 million people, including 26 million refugees and 3.5 asylum seekers. Refugees and asylum seekers face serious socioeconomic and healthcare barriers and are therefore particularly vulnerable to physical and mental health risks, which are sometimes exacerbated by immigration policies and local social discriminations. Calls for a strong evidence base for humanitarian action have encouraged conducting research to address the barriers and needs of refugees and asylum seekers. Given the role of epigenetics factors to mediate the effect of psychological and environmental exposures, epigenetic modifications have been used as biomarkers for life adversity and disease states. Therefore, epigenetic research can be potentially beneficial to address some of the issues associated with refugees and asylum seekers. Here, we review the value of previous and ongoing epigenetic studies with traumatized populations, explore some of the ethical challenges associated with epigenetic research with refugees and asylees and offer suggestions to address or mitigate some of these challenges. Researchers have an ethical responsibility to implement strategies to minimize the harms and maximize the short and long-term benefits to refugee and asylee participants.

Multiple studies have been performed to identify the most common ethical dilemmas encountered by ethics consultation services. However, limited data exists comparing the content of ethics consultations requested by specific hospital specialties. It remains unclear whether the scope of ethical dilemmas prompting an ethics consultation differ between specialties and if there are types of ethics consultations that are more or less frequently called based on the specialty initiating the ethics consult. This study retrospectively assessed the incidence and content of ethics consultations called by surgical vs. non-surgical specialties between January 1, 2013 to December 31, 2018 using our RedCap Database and information collected through the EMR via our Clinical and Translational Science Center. 548 total ethics consultations were analyzed. Our results demonstrate that more surgical consults originated from the ICU, as opposed to lower acuity units, and surgical patients were more likely to have a DNR in place. Surgical specialties were more likely to call about issues relating to withholding/withdrawing life-sustaining treatment, while non-surgical specialties were more likely to call about issues related to discharge planning. There appear to be morally relevant differences between consults classified as the “same” that are not entirely captured by the usual ethics consultations classification system. In conclusion, this study highlights the unique ethical issues experienced by surgical vs. non-surgical specialties. Ultimately, our data can help ethics consultation services determine how best to educate various hospital specialties to approach ethical issues commonly experienced within their field.

It now seems technically feasible to culture human embryos beyond the “fourteen‐day limit,” which has the potential to increase scientific understanding of human development and perhaps improve infertility treatments. The fourteen‐day limit was adopted as a compromise but subsequently has been considered an ethical line. Does it remain relevant in light of technological advances permitting embryo maturation beyond it? Should it be changed and, if so, how and why? What justifications would be necessary to expand the limit, particularly given that doing so would violate some people's moral commitments regarding human embryos? Robust stakeholder engagement preceded adoption of the fourteen‐day limit and should arguably be part of efforts to reassess it. Such engagement could also consider the need for enhanced oversight of human embryo research. In the meantime, developing and implementing reliable oversight systems should help foster high‐quality research and public confidence in it.

The U.S. Food and Drug Administration (FDA) announced recently that food products derived from some animal clones and their offspring are safe for human consumption. In response to criticism that it had failed to engage with ethical, social, and economic concerns raised by livestock cloning, the FDA argued that addressing normative issues prior to issuing a final ruling on animal cloning is not part of its mission. In this article, the authors reject the FDA's claim that its mission to protect and advance public health can be accomplished without considering ethical issues or without making value judgments. The authors offer two arguments in support of their position. First, the agency's mission statement presupposes significant normative commitments and judgments. Second, the FDA's risk assessment of food products from cloned animals and their offspring is itself clearly shaped by a variety of normative commitments.

Recent discussion on the need to reassess research ethics standards has called into question familiar concepts such as equipoise, coercion, undue inducement, and the protection of vulnerable subjects. Reassessment of these concepts can be useful for a variety of reasons. It can eliminate conceptual murkiness, can assist in the proposal of regulations to better protect human subjects, and can elucidate ethical concerns. In this essay, I call attention here to a different, and often neglected, reason why reassessment of research ethics concepts can be helpful. It can undermine the all-too-common practice of taking as a given the social and political conditions in which biomedical research takes place and can encourage the inclusion of broader questions about social justice, human flourishing, or about the importance of taking into account the social determinants of health and disease. I will focus on some recent attempts to reevaluate the concept of vulnerability in research ethics. I will argue that such attempts, by calling attention to the characteristics that can render participants vulnerable, can promote, rather than discourage, moral reflection about social and global justice concerns among bioethicists, policy makers, investigators, and members of Institutional Review Boards.