Inmaculada de Melo-Martin

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.

Embryo screening technologies offer important benefits to individuals who use them and society. These techniques can expand the reproductive options of many prospective parents and can contribute to reducing the burdens of disease and disability. Nonetheless, embryo screening techniques present individuals and societies with important ethical challenges. Here, I explore some of them. In particular, I discuss the costs for prospective parents of increased reproductive choices, as well as concerns about sanctioning problematic social norms, increasing social injustice, limiting the ways societies can tackle diseases and disabilities, and promoting the commodification of children.

Background Much like academic-industry partnerships, industry financial support of patient advocacy organizations has become very common in recent years. While financial conflicts of interest between PAOs and industry have received more attention in recent years, robust efforts to mitigate these conflicts are still limited. Main body The authors outline the possible benefits and ethical concerns that can result from financial interactions between biomedical companies and PAOs. They argue that the use of novel strategies, such as the creation of a standing ethics committee, could be helpful in managing FCOIs and ensuring the warranted trust of PAO’s constituents. Although ethics committees to address FCOIs are common in the academic context, its use by PAOs is still limited. The authors conclude by describing the process of development and implementation of such an ethics committee at the Crohn’s & Colitis Foundation. Conclusions While collaborations with industry can result in conflicts of interest, PAOs can develop strategies to address those conflicts. One such strategy is the creation of a standing independent ethics committee to guide PAOs on new and/or existing programs and protocols as they pertain to their industry relationships.

The growing commercialization of scientific research has raised important concerns about industry bias. According to some evidence, so-called industry bias can affect the integrity of the science as well as the direction of the research agenda. I argue that conceptualizing industry’s influence in scientific research in terms of bias is unhelpful. Insofar as industry sponsorship negatively affects the integrity of the research, it does so through biasing mechanisms that can affect any research independently of the source of funding. Talk about industry bias thus offers no insight into the particular epistemic shortcomings at stake. If the concern is with the negative effects that industry funding can have on the research agenda, conceptualizing this influence as bias obscures the ways in which such impact is problematic and limits our ability to offer solutions that can successfully address the concerns raised by the growing role of private funding in science.

Several feminist philosophers of science have argued that social and political values are compatible with, and may even enhance, scientific objectivity. A variety of normative recommendations have emerged regarding how to identify, manage, and critically evaluate social values in science. In particular, several feminist theorists have argued that scientific communities ought to: 1) include researchers with diverse experiences, interests, and values, with equal opportunity and authority to scrutinize research; 2) investigate or "study up" scientific phenomena from the perspectives, interests, and conditions of marginalized stakeholders potentially affected by the research; and 3) make gender, ethnicity, class, and geographical location "visible," or use them as categories of analysis when appropriate. Yet, more work is needed to determine what exactly these recommendations would require, and the benefits they would yield, in specific research contexts. Using the recent development of the human papillomavirus (HPV) vaccines, we examine how these three feminist recommendations would have applied. We argue that these principles would have yielded several epistemic and social benefits in the HPV case, as well as in biomedical research more generally. That is, biomedical research guided by these principles would not only be epistemically superior, but also more socially responsible

As a general claim, most philosophers of science accept that science is not value-free. The disagreements lie in the proverbial details. The essays in Current Controversies in Values and Science, edited by Kevin Elliott and Daniel Steel focus on such details. Like other volumes in the Routledge Current Controversies in Philosophy’s series, this one asks ten well-known philosophers of science to engage with various questions. Each question receives roughly positive and negative responses, though the authors’ nuanced answers make clear that the contrasting views also involve significant agreement.The first question asks whether we can distinguish epistemic from nonepistemic values. Hugh Lacey argues that such...

A new reprogenetic technology, mitochondrial replacement, is making its appearance and, unsurprisingly given its promise to wash off our earthly stains --or at least the scourges of sexual reproduction--, John Harris finds only reasons to celebrate this new scientific feat.1 In fact, he finds mitochondrial replacement techniques (MRTs) so “unreservedly welcome” that he believes those who reject them suffer from “a large degree of desperation and not a little callousness.”2 Believing myself to be neither desperate nor callous, but finding myself also no closer at all – not even after reading his article—to following Harris in welcoming these technologies wholeheartedly, it seems appropriate to respond.

Although shared decision-making is a standard in medical care, unilateral decisions through process-based conflict resolution policies have been defended in certain cases. In patients who do not stand to receive proportional clinical benefits, the harms involved in interventions such as cardiopulmonary resuscitation seem to run contrary to the principle of non-maleficence, and provision of such interventions may cause clinicians significant moral distress. However, because the application of these policies involves taking choices out of the domain of shared decision-making, they face important ethical and legal problems, including a recent challenge to their constitutionality. In light of these concerns, we suggest a re-conceptualization of informed non-dissent as an alternative approach in cases where the application of process-based policies is being considered. This clinician-directed communication model still preserves what is valuable in such policies and salvages professional integrity, while minimising ethical and legal challenges.

BACKGROUND: Anonymity remains the more common practice in gamete donations, but legislation prohibiting anonymity with a goal of protecting donor-conceived children's right to know their genetic origins is becoming more common. However, given the dearth of research investigating the function of anonymity for donors and recipients, it is unclear whether these policies will accomplish their goals. The aim of this study was to explore experiences with anonymity among oocyte donors and recipients who participated in an anonymous donor oocyte program and to understand the ways in which anonymity functions for them. METHODS: Semistructured interviews were conducted with 50 women: 28 oocyte donors and 22 recipients who were recruited from an academic center for reproductive medicine in the United States. RESULTS: Donors and recipients view anonymity both as a mechanism to protect the interests of all parties (recipients, donors, and donor-conceived children) and as a point of conflict. Specifically, three key areas were identified where both donors and recipients saw anonymity as having an important role: relieving anxieties about family structures and obligations; protecting their interests and those of donor-conceived children (while acknowledging where interests conflict); and managing the future. CONCLUSION: As gamete donation increasingly moves away from the practice of anonymity, examining why anonymity matters to stakeholders will be helpful in devising strategies to successfully implement identity-release options.

Proponents of moral enhancement believe that we should pursue and apply biotechnological means to morally enhance human beings, as failing to do so is likely to lead to humanity's demise. Unsurprisingly, these proposals have generated a substantial amount of debate about the moral permissibility of using such interventions. Here I put aside concerns about the permissibility of moral enhancement and focus on the conceptual and evidentiary grounds for the moral enhancement project. I argue that such grounds are quite precarious.

Current debates about climate change or vaccine safety provide an alarming illustration of the potential impacts of dissent about scientific claims. False beliefs about evidence and the conclusions that can be drawn from it are commonplace, as is corrosive doubt about the existence of widespread scientific consensus. Deployed aggressively and to political ends, ill-founded dissent can intimidate scientists, stymie research, and lead both the public and policymakers to oppose important policies firmly rooted in science. To criticize dissent is, however, a fraught exercise. Skepticism and fearless debate are key to the scientific process, making it both vital and incredibly difficult to characterize and identify dissent that is problematic in its approach and consequences. Indeed, as de Melo-Martín and Intemann show, the criteria commonly proposed as means of identifying inappropriate dissent are flawed, and the strategies generally recommended to tackle such dissent are not only ineffective but could even make the situation worse. The Fight against Doubt proposes that progress on this front can best be achieved by enhancing the trustworthiness of the scientific community and being more realistic about the limits of science when it comes to policymaking. It shows that a richer understanding is needed of the context in which science operates so as to disarm problematic dissent and those who deploy it in the pursuit of their goals.

I argue here that critics of biological explanations of human nature are mistaken when they maintain that the truth of genetic determinism implies the end of critical evaluation and reform of our social institutions. Such a claim erroneously presupposes that our social values, practices, and institutions have nothing to do with what makes biological explanations troublesome. What constitutes a problem for those who are concerned with social justice is not the fact that particular behaviors might be genetically determined, but the fact that our value system and social institutions create the conditions that make such behaviors problematic.

The aim of this paper is to show that critics of biological explanations of human nature may be granting too much to those who propose such explanations when they argue that the truth of genetic determinism implies an end to critical evaluation and reform of our social institutions. This is the case because when we argue that biological determinism exempts us from social critique we are erroneously presupposing that our social values, practices, and institutions have nothing to do with what makes biological explanations troublesome. My argument is that what constitutes a problem for those who are concerned with social justice is not the fact that particular behaviours may be genetically determined, but the fact that our value system and social institutions create the conditions that make such behaviours problematic. Thus, I will argue that even if genetic determinism were correct, the requirement of assessing and transforming our social practices and institutions would be far from superfluous. Biology is rarely destiny for human beings and the institutions they create

Book Symposium on Andrew Feenberg’s Between Reason and Experience: Essays in Technology and Modernity Content Type Journal Article Pages 203-226 DOI 10.1007/s13347-011-0017-8 Authors Inmaculada de Melo-Martín, Division of Medical Ethics, Weill Cornell Medical College, New York, NY 10065, USA David B. Ingram, Loyola University Chicago, 6525 North Sheridan Road, Chicago, IL 60626, USA Sally Wyatt, e-Humanities Group, Royal Netherlands Academy of Arts and Sciences (KNAW) & Maastricht University, Cruquiusweg 31, 1019 AT Amsterdam, The Netherlands Yoko Arisaka, Forschungsinstitut für Philosophie Hannover, Gerberstrasse 26, 30169 Hannover, Germany Andrew Feenberg, School of Communication, Simon Fraser University at Harbour Centre, 515 West Hastings Street, Vancouver, BC V6B 5K3, Canada Journal Philosophy & Technology Online ISSN 2210-5441 Print ISSN 2210-5433 Journal Volume Volume 24 Journal Issue Volume 24, Number 2.

Anonymous gamete donation continues to be practised in most jurisdictions around the world, but this practice has come under increased scrutiny. Thus, several countries now mandate that donors be identifiable to their genetic offspring. Critics contend that anonymous gamete donation harms the interests of donor-conceived individuals and that protection of these interests calls for legal prohibition of anonymous donations. Among the vital interests that critics claim are thwarted by anonymous donation are an interest in having a strong family relationship, health interests, and an interest in forming a healthy identity. This article discusses each of these interests and examines what they could involve. The legislation in two countries is considered: Spain, which mandates anonymous gamete donation, and the UK, which prohibits such practice, to assess how these different legislations might or might not protect these vital interests.

Living donation provides important access to organ transplantation, which is the optimal therapy for patients with end-stage liver or kidney failure. Paired exchanges have facilitated thousands of kidney transplants and enable transplantation when the donor and recipient are incompatible. However, frequently willing and otherwise healthy donors have contraindications to the donation of the organ that their recipient needs. Trans-organ paired exchanges would enable a donor associated with a kidney recipient to donate a lobe of liver and a donor associated with a liver recipient to donate a kidney. This article explores some of the ethical concerns that trans-organ exchange might encounter including unbalanced donor risks, the validity of informed consent, and effects on deceased organ donation