This paper focuses on Precision Public Health (PPH), described in the scientific literature as an effort to broaden the scope of precision medicine by extrap- olating it towards public health. By means of the “All of Us” (AoU) research pro- gram, launched by the National Institutes of Health in the U.S., PPH is being devel- oped based on health data shared through a broad range of digital tools. PPH is an emerging idea to harness the data collected for precision medicine (...) to be able to tai- lor preventive interventions for at-risk groups. The character of these data concern genetic identity, lifestyle and overall health and therefore affect the ‘intimacy’ of personhood. Through the concept of biological citizenship, we elucidate how AoU and its recruitment tactics, by resonating ‘diversity’, at the same time appeal to and constitute identity, defining individuals as ‘data sharing subjects’. Although PPH is called for; the type of bio-citizenship that is enacted here, has a particular definition, where participant recruitment focuses on ‘citizenship’ in terms of empowerment (front), it is the ‘bio’ prefix that has become the main focus in terms of research. i.e. biosubjectivities vs biocapital. This raises the question whether the societal chal- lenges that often underlie public health issues can be sufficiently dealt with based on the way ‘diversity’ is accounted for in the program. We suggest that the AoU still risks of harming underrepresented groups based on the preconditions and the design of the program. (shrink)

In this paper, I distinguish three general approaches to public trust in science, which I call the individual approach, the semi-social approach, and the social approach, and critically examine their proposed solutions to what I call the problem of harmful distrust. I argue that, despite their differences, the individual and the semi-social approaches see the solution to the problem of harmful distrust as consisting primarily in trying to persuade individual citizens to trust science and that both approaches face two general (...) problems, which I call the problem of overidealizing science and the problem of overburdening citizens. I then argue that in order to avoid these problems we need to embrace a (thoroughly) social approach to public trust in science, which emphasizes the social dimensions of the reception, transmission, and uptake of scientific knowledge in society and the ways in which social forces influence both positively and negatively the trustworthiness of science. (shrink)

Over the past decades the mortality rate in the United States has decreased and life expectancy has increased. Yet a number of recent studies have drawn Americans attention to the fact that racial and ethnic disparities persist in health care. It is clear that the U.S. health care system is not only flawed for many reasons including basic injustices, but may be the cause of both injury and death for members of racial and ethnic minorities.In 2002, an Institute of Medicine (...) report requested by Congress listed more than 100 studies documenting a wide range of disparities in the United States health care system. This report found that people belonging to racial and ethnic minorities often receive lower quality of health care than do people of European descent, even when their medical insurance coverage and income levels are the same as that of the latter. (shrink)

This paper discusses the use of the Milgram obedience experiments and the Tuskegee syphilis study in the bioethical literature. The two studies are presented and a variety of uses of them identified and discussed. It is argued that the use of these studies as paradigms of problematic research relies on a reduction of their complexity. What is discussed is thus often constructions of these studies that are closer to hypothetical examples than to the real studies.

ArgumentIn the 1970s a public controversy erupted over the proposed use of brain operations to curtail violent behavior. Civil libertarians, civil rights and community activists, leaders of the anti-psychiatry movement, and some U.S. Congressmen charged psychosurgeons and the National Institute of Mental Health, with furthering a political project: the suppression of dissent. Several government-sponsored investigations into psychosurgery rebutted this charge and led to an official qualified endorsement of the practice while calling attention to the need for more “scientific” understanding and (...) better ethical safeguards. This paper argues that the psychosurgery debate of the 1970s was more than a power struggle between members of the public and the psychiatric establishment. The debate represented a clash between a postmodern skepticism about science and renewed focus on ultimate ends, on the one hand, and a modern faith in standards and procedures, a preoccupation with means, on the other. These diverging commitments made the dispute ultimately irresolvable. (shrink)

Publics trust experts for personal and pro-social reasons. Scientists are among the experts publics trust most, and so, epistemic trust is routinely afforded to them. The call for epistemic trust to be more socially situated in order to account for the impact of science on society and public welfare is at the forefront of enhanced epistemic trust. I argue that the value-free ideal for science challenges establishing enhanced epistemic trust by preventing the inclusion of non-epistemic values throughout the evaluation of (...) evidence and communication of these values. By selectively silencing non-epistemic values, the ideal cannot take into account publics’ social and moral responses to inductive risk, which are instrumental for defining and determining public welfare. Furthermore, by emphasising epistemic values almost exclusively in science education and communication, the value-free ideal is presented to publics in such a way that it becomes a social indicator of trust. I show this through examination of the importance of values in decisions to trust, and conclude that values (and restrictions on them) can be used by lay publics to help decide which experts to trust. (shrink)

Contrary to the common view, this paper suggests that the Hippocratic oath does not directly refer to the controversial subjects of euthanasia and abortion. We interpret the oath in the context of establishing trust in medicine through departure from Pantagruelism. Pantagruelism is coined after Rabelais' classic novel Gargantua and Pantagruel. His satire about a wonder herb, Pantagruelion, is actually a sophisticated model of anti-medicine in which absence of independent moral values and of properly conducted research fashion a flagrant over-medicalization of (...) human problems. Ultimately this undermines the therapeutic core of medicine itself. We contend that PAS is a case of such over-medicalization and that its institution creates medicophobia. This article does not express an opinion about euthanasia in general. Rather, we claim that physicians should learn from the oath and from Rabelais that they should keep their practice to medical care and not to exploit their expertise and social privileges for the sake of ulterior motives, even when their patients desire those goals. (shrink)

A trend called ‘African bioethics’ is growing on the continent due to perceptions of existing bioethics, especially guidelines for international collaborative research, as ‘ethical imperialism’. As a potential alternative to ‘Western Principlism,’ ‘African bioethics’ is supposed to be indigenous to Africa and reflective of African identity. However, despite many positive insights in the on-going discussions, it is feared that the growth of bioethics in Africa lacks a clear direction. Some of the views threaten to distort the essence of bioethics and (...) its development on the continent. This paper presents some of the dominant views on ‘African bioethics’, an examination of which reveals some valuable insights into the direction bioethics in Africa ought to take, but at the same time confirms some methodological challenges in some contributions to the discussion. On top of acknowledging critical insights in the discussion, the paper reveals that some views are characterized by arbitrariness and rhetorical discussions based on a strong negative and yet hard-to-accept assumption; doubtful designation; lack of a clearer problem being addressed and consequently obscure question and aim of the discourse. Finally, some methodological insights are proposed to guide bioethics research and scholarship in Africa. Specifically, the paper proposes that in search for the legitimacy of bioethics in Africa, we ought to protect the essence of bioethics by giving considerable attention to the utility of subsequent bioethics. To achieve this we need to specify the problem and proper designation for the discourse; focus on principles qua principles with impartiality and how to ensure their strict implementation; and encourage critical thinking as part of bioethics. In cultivating bioethics in Africa, the pursuit of identity is legitimate but must be conditional in light of other competing considerations. We should focus on an objective search for bioethical principles that can be effective in responding to African and global health challenges of moral significance, irrespective of the origin of the principles and at the same time focus more on strategies for ensuring compliance with resulting principles. (shrink)

The foundations of research ethics are riven with fault lines emanating from a fear that if research is too closely connected to weighty social purposes an imperative to advance the common good through research will justify abrogating the rights and welfare of study participants. The result is an impoverished conception of the nature of research, an incomplete focus on actors who bear important moral responsibilities, and a system of ethics and oversight highly attuned to the dangers of research but largely (...) silent about threats of ineffective, inefficient, and inequitable medical practices and health systems. -/- In For the Common Good: Philosophical Foundations of Research Ethics, Alex John London defends a conception of the common good that grounds a moral imperative with two requirements. The first is to promote research that generates the information necessary to enable key social institutions to effectively, efficiently, and equitably safeguard the basic interests of individuals. The second is to ensure that research is organized as a voluntary scheme of social cooperation that respects its various contributors' moral claims to be treated as free and equal. Connecting research to the goals of a just social order grounds a framework for assessing and managing research risk that reconciles these requirements and justifies key oversight practices in non-paternalistic terms. Reconceiving research ethics as resolving coordination problems and providing credible assurance that these requirements are being met expands the issues and actors that fall within the purview of the field and provides the foundation for a more unified and coherent approach to domestic and international research. -/- This is an open access title available under the terms of a CC BY-NC-ND 4.0 license. It is free to read at Oxford Scholarship Online and offered as a free PDF download from OUP and selected open access locations. (shrink)

Our society gives certain rights and protections to those who are punished and incarcerated, deeming them a vulnerable group in need of additional protections because they are under state control. Despite these protections, prisoners are still susceptible to mistreatment and abuse. This paper delves into one area in which prisoners are particularly vulnerable—the use of prison labor to fight wildfires in the western United States. In this paper, I first broadly discuss prison labor, before going into the current ethical principles (...) and guidelines in the field of corrections that address the treatment of prisoners and prison labor. I argue that these principles and guidelines should be augmented to help those in corrections to make decisions about what is ethical; suggesting that how researchers evaluate proposed research projects could serve as a model for decision-making. I then introduce prison fire camps, considering whether they are ethical by research ethics principles, and suggesting how they can be changed to better reflect the values professed by our society. (shrink)

Research integrity is usually discussed in terms of responsibilities that individual researchers bear towards the scientific work they conduct, as well as responsibilities that institutions have to enable those individual researchers to do so. In addition to these two bearers of responsibility, a third category often surfaces, which is variably referred to as culture and practice. These notions merit further development beyond a residual category that is to contain everything that is not covered by attributions to individuals and institutions. This (...) paper discusses how thinking in RI can take benefit from more specific ideas on practice and culture. We start by articulating elements of practice and culture, and explore how values central to RI are related to these elements. These insights help identify additional points of intervention for fostering responsible conduct. This helps to build “cultures and practices of research integrity”, as it makes clear that specific times and places are connected to specific practices and cultures and should have a place in the debate on Research Integrity. With this conceptual framework, practitioners as well as theorists can avoid using the notions as residual categories that de facto amount to vague, additional burdens of responsibility for the individual. (shrink)

Background In modern Russia, any clinical investigation of a pharmaceutical for use in humans is subject to prior evaluation and approval by the Ministry of Health and its Central Ethics Committee. Despite this, some researchers and trial sponsors fail to comply, this is particularly true in case of the studies initiated by domestic sponsors or sponsor-investigators and published in Russian language medical journals. This exploratory research aims to discover whether it is a sporadic non-compliance with regulations or a common practice. (...) Methods We searched the Russian language database eLIBRARY for the phrase ‘results of a randomised trial’. We selected publications reporting clinical trials and conducted in Russia. For each of the selected studies, we searched the state register of the approved clinical trials. We assessed whether the investigational medicinal product was approved for marketing in Russia; the therapeutic indications, posology, and administration method in the clinical trial were consistent with the approved labelling; the issue of the journal included an advertisement of the medicinal product in question; and the full description of the methodology corroborated that the clinical trial was randomised, as was stated in the title or abstract. Results Of the 26 selected articles, 22 reported the results of unauthorised clinical trials. Three of those trials were conducted in children. Twenty-one studies reported on data from unauthorised trials for investigational products approved for marketing in Russia. However, in nine cases, the therapeutic indications, posology, or administration method did not match the conditions indicated in the labelling. Moreover, in one case, the unauthorised trial included a drug therapy intervention where the active substance was not approved for use in any medicinal product marketed in Russia. In 14 of the 26 articles, the issue of the journal or the article itself contained an advertisement for the same medicinal product or, in one case, its manufacturer. All publications accompanied by advertisements claimed that the medicinal product in question was efficacious. Conclusions A substantial fraction of the clinical trials initiated by domestic sponsors and reported in Russian medical journals failed to obtain the mandatory prior evaluation and approval from the regulator. This can affect the rights and well-being of the study participants and the scientific validity of the studies. (shrink)

Babylon 5, like other great sci-fi franchises, touched on important ethical questions. Two ethical conundrums relating to the series’ main characters included providing life-saving treatment to a c...

This paper follows on from a brief debate about the role of conscientious objection in healthcare, where the issue arose as to whether conscientious objection is (or can) be a tool of resistance against systemic injustice. The paper contributes to this debate by highlighting that some authors generally opposed to conscientious objection in healthcare have shown some support to this idea. Perhaps if there is one area in which all can agree, it is that in healthcare conscientious objection should be (...) allowed so as to prevent cases of systemic injustice. (shrink)

This paper explores the important role of critical science, and in particular of post-colonial and decolonial theories, in understanding and shaping the ongoing advances in artificial intelligence. Artificial intelligence is viewed as amongst the technological advances that will reshape modern societies and their relations. While the design and deployment of systems that continually adapt holds the promise of far-reaching positive change, they simultaneously pose significant risks, especially to already vulnerable peoples. Values and power are central to this discussion. Decolonial theories (...) use historical hindsight to explain patterns of power that shape our intellectual, political, economic, and social world. By embedding a decolonial critical approach within its technical practice, AI communities can develop foresight and tactics that can better align research and technology development with established ethical principles, centring vulnerable peoples who continue to bear the brunt of negative impacts of innovation and scientific progress. We highlight problematic applications that are instances of coloniality, and using a decolonial lens, submit three tactics that can form a decolonial field of artificial intelligence: creating a critical technical practice of AI, seeking reverse tutelage and reverse pedagogies, and the renewal of affective and political communities. The years ahead will usher in a wave of new scientific breakthroughs and technologies driven by AI research, making it incumbent upon AI communities to strengthen the social contract through ethical foresight and the multiplicity of intellectual perspectives available to us, ultimately supporting future technologies that enable greater well-being, with the goal of beneficence and justice for all. (shrink)

Legal, medical, and public health professionals have been complicit in creating and maintaining systems that drive health inequities. To ameliorate this, current and future leaders in law, medicine, and public health must learn about racism and its impact along the life course trajectory and how to engage in antiracist practice and health equity work.

Epidemiology is a core science of public health, focusing on research related to the distribution and determinants of both positive and adverse health states and events and on application of knowledge gained to improve public health. The American College of Epidemiology (ACE) is a professional organization devoted to the professional practice of epidemiology. As part of that commitment, and in response to concerns for more explicit attention to core values and duties of epidemiologists in light of emerging issues and increased (...) scrutiny of epidemiology, the College developed, adopted, and published a set of Ethics Guidelines. The structure of the ACE ethics guidelines is in four parts: (1) a brief statement of core values and duties of epidemiologists, coupled with the virtues important to professional practice; (2) concise statements of key duties and obligations; (3) exposition of the duties and obligations with more applications; and (4) a brief summary and conclusion. The Guidelines have been published on the ACE website and in the official College journal Annals of Epidemiology. The guidelines contain (and maintain) core elements that define the discipline of epidemiology and its fundamental duties, but they are also intended to be dynamic and evolving, responsive to a changing professional and social environment. (shrink)

This special issue addresses the legacy of the U.S. Public Health Service Syphilis Study on health reform, particularly the Affordable Care Act. This article offers readers a guide to the themes that emerge in this issue. These themes include individual consent interrelated to consequences in populations issues, need for better government oversight in research and health care, and the need for overhauling our bioethics training to develop a population-level, culturally driven approach to research bioethics. We hope the guidance offered in (...) this issue will help shape a new framework to bioethics that can be integrated into the foundation of health care reform. (shrink)

Social scientists have begun elucidating the variables that influence public trust in science, yet little is known about hype in biotechnology and its effects on public trust. Many scholars claim that hyping biotechnology results in a loss of public trust, and possibly public enthusiasm or support for science, because public expectations of the biotechnological promises will be unmet. We argue for the need for empirical research that examines the relationships between hype, public trust, and public enthusiasm/support. We discuss the complexities (...) in designing empirical studies that provide evidence for a causal link between hype, public trust, and public enthusiasm/support, but also illustrate how this may be remedied. Further empirical research on hype and public trust is needed in order to improve public communication of science and to design evidence-based education on the responsible conduct of research for scientists. We conclude that conceptual arguments made on hype and public trust must be nuanced to reflect our current understanding of this relationship. (shrink)

Medical experimentation on humans with “classic” sexually transmitted diseases (e.g., syphilis, gonorrhea) is not generally well known, but experimentation with others such as Granuloma inguinale, or Donovanosis, is even less so. Endemic to non-existent here, hyper-epidemic there, between 1880 and 1950 Donovanosis was linguistically and morally “constructed” as a disease of poor, sexually profligate, tropical, darkly-skinned persons. It was also experimentally produced on and in African-American patients in many charity hospitals in the American South. This essay analyzes Donovanosis literature of (...) the period that heavily featured skin color, climate and tropicality, venereal sin, and racial susceptibility. It then recounts the history of human experimentation with it, and explains both its linguistic construction and its biomedical experimental history in terms of “disease narratives” produced not only by but for venereologists. (shrink)

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. (...) First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing. (shrink)

This article analyses and discusses dilemmas, ambivalences and problematic issues related to research ethics. This is done firstly by making a distinction between procedural research ethics and particularistic research ethics. Such a distinction reflects a theoretical construction and generalization. In practice, there can be a very close correlation between the two types. In the following, the distinction will therefore be used as a starting point for the presentation of a pragmatic-dualist research ethics. The approach is dualist because it draws on (...) the presence of two independent, contrasting understandings, which are essentially different yet equal aspects of good research ethics; it is pragmatic because this dualism is structural and institutional by nature, and designed with an eye to what can realistically and expediently be done in practice. Thus the intention of the article is to both analyze and discuss two different understandings of research ethics and simultaneously qualify a research ethics that draws on both of these understandings. Furthermore, the intention is to visualize a different understanding of research ethics which others can address and elaborate on or qualify. Even at this point, this research ethic can be included in a catalogue of understandings of ethical research practice an can be exploited in ethical research practice. (shrink)

Using 2021 data and information related to COVID‐19, this paper discusses the contribution of colonization, medical mistrust and racism to vaccine hesitancy. Vaccine hesitancy is defined as ‘delay in acceptance or refusal of vaccines despite availability’. Colonization is described as the ‘way the extractive economic system of capitalism came to the United States, supported by systems of supremacy and domination, which are a necessary part of keeping the wealth and power accumulated in the hands of the colonizers and ultimately their (...) financiers’. The system of colonization results in policies and practices, including those related to health, that continue to create oppression and support racism. Persons experience trauma as the byproduct of colonization. Chronic stress and trauma create chronic inflammation and all diseases, whether genetic or lifestyle, have a common pathogenesis that is a component of inflammation. Medical mistrust is the absence of trust that healthcare providers and organizations genuinely care for patients' interests, are honest, practice confidentiality and have the competence to produce the best possible results. Finally, racism is described as everyday racism and perceived racism in healthcare. (shrink)

Australian Human Research Ethics Committees have to contend with ever-increasing workloads and responsibilities which go well beyond questions of mere ethics. In this article, I shall examine how the roles of HRECs have changed, and show how this is reflected in the iterations of the National Statement on Ethical Conduct in Human Research 2007. In particular I suggest that the focus of the National Statement has shifted to concentrate on matters of research governance at the expense of research ethics, compounded (...) by its linkage to the Australian Code for the Responsible Conduct of Research in its most recent iteration. I shall explore some of the challenges this poses for HRECs and institutions and the risks it poses to ensuring that Australian researchers receive clear ethical guidance and review. (shrink)

Environmental health research produces scientific knowledge about environmental hazards crucial for public health and environmental justice movements that seek to prevent or reduce exposure to these hazards. The environment in environmental health research is conceptualized as the range of possible social, biological, chemical, and/or physical hazards or risks to human health, some of which merit study due to factors such as their probability and severity, the feasibility of their remediation, and injustice in their distribution. This paper explores the ethics of (...) identifying the relevant environment for environmental health research, as judgments involved in defining an environmental hazard or risk, judgments of that hazard or risk's probability, severity, and/ or injustice, as well as the feasibility of its remediation, all ought to appeal to non-epistemic as well as epistemic values. I illustrate by discussing the case of environmental lead, a housing-related hazard that remains unjustly distributed by race and class and is particularly dangerous to children. Examining a controversy in environmental health research ethics where researchers tested multiple levels of lead abatement in lead-contaminated households, I argue that the broader perspective on the ethics of environmental health research provided in the first part of this paper may have helped prevent this controversy. (shrink)

BackgroundWhen conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations.MethodsA systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review.ResultsOf 1447 articles found 1391 were excluded (...) ; 56 were relevant and included. Articles were categorised into original research that evaluated the consent process or publications detailing the process of seeking consent and guidelines for ethical research. Guidelines were categorised into international ; national and state/regional/local guidelines. In five studies based in Australia, Canada and The United States of America the consent process with Indigenous people was objectively evaluated. In 13 other studies interpreters, voice recording, videos, pictures, flipcharts and “plain language” forms were used to assist in seeking consent but these processes were not evaluated. Some Indigenous organisations provide examples of community-designed resources for seeking consent and describe methods of community engagement, but none are evaluated. International, national and local ethical guidelines stress the importance of upholding Indigenous values but fail to specify methods for engaging communities or obtaining individual consent. In the ‘Grey literature’ concerns about the consent process are identified but no solutions are offered.ConclusionConsultation with Indigenous communities is needed to determine how consent should be sought from the community and the individual, and how to evaluate this process. (shrink)

First, to what level of quality can medical ethics a spire, if it ignores callous discrimination in medrcal practice against large populations of the innocent poor? Second, how effective can such theories be in addressing the critical issues of medical and clinical ethics if they are unable to contribute to the closing of the gap of sociomedical disparity?Marcio Fabri dos Anjos, Medical Ethics in the Developing World: A Liberation Theology Perspective.

En este ensayo nos proponemos realizar algunas consideraciones argumentativas breves sobre la ética en investigaciones con seres humanos vulnerables. Para ello, examinaremos el conocido caso de Tuskegee (Alabama), ocurrido entre los años 1932-1972, en el que 600 personas afroamericanas fueron inoculadas con sífilis sin su consentimiento. Luego, desde una postura crítica, abordaremos el caso desde tres perspectivas bioéticas. En primer lugar, lo analizaremos desde el plano jurídico-normativo, luego desde el principialismo formulado por Tom Beauchamp y James Childress, y finalmente, desde (...) el enfoque conceptual de la “vulnerabilidad”, referido a las poblaciones participantes en las investigaciones bioéticas. En efecto, nos centraremos en los miramientos que estos enfoques plantean de forma expresa, para realizar un análisis reflexivo sobre el necesario aspecto ético, requerido en el seno de toda investigación bioética con personas vulnerables. (shrink)

Experimental design is one aspect of a scientific method. A well-designed, properly conducted experiment aims to control variables in order to isolate and manipulate causal effects and thereby maximize internal validity, support causal inferences, and guarantee reliable results. Traditionally employed in the natural sciences, experimental design has become an important part of research in the social and behavioral sciences. Experimental methods are also endorsed as the most reliable guides to policy effectiveness. Through a discussion of some of the central concepts (...) associated with experimental design, including controlled variation and randomization, this chapter will provide a summary of key ethical issues that tend to arise in experimental contexts. In addition, by exploring assumptions about the nature of causation and by analyzing features of causal relationships, systems, and inferences in social contexts, this chapter will summarize the ways in which experimental design can undermine the integrity of not only social and behavioral research but policies implemented on the basis of such research. (shrink)

Attending to racism and US bioethics raises the question of whether and how racism in bioethics has been the subject of bioethical scrutiny. Bioethics has certainly brought its analytical tools to bear on racist aspects of clinical care and biomedical research. But has bioethics studied racism in bioethics as its subject? A close examination of relevant reports, articles, and books in the US bioethics literature published in the early days of the field, pre-2000, shows mixed findings. In the 1970s, racism (...) as a bioethical concern was variously nonexistent, vaguely implied, and powerfully examined and condemned. In the late 1980s/early to mid-1990s, racism was more frequently described and critiqued, often in the context of discussions about African American perspectives of biomedical ethics and inequities in health care. Understanding how racism in bioethics has been addressed as an ethical concern has consequences for the historical narratives told about the field, for antiracist bioethics work today, and for envisioning an antiracist future for bioethics. (shrink)

According to the doctrine of informed consent medical procedures are morally permissible when a patient has consented to the treatment. Problematically it is possible for a patient to consent to or refuse treatment which consequently leads to a decline in her best interests. Standardly, such conflicts are resolved by prioritising the doctrine of informed consent above the requirement that the medical practitioner acts in accordance with the duty of care. This means that patient free choice is respected regardless as to (...) whether her choice leads to a decline in her best interests, since to disrespect patient choice would be an instance of ‘unwarranted’ paternalism. This thesis defends the claim that in cases where patient consent comes into conflict with her best interests, paternalistic interference is in fact justified. The ambition of the thesis is thus twofold: in the first place I argue that the doctrine of informed consent cannot be used as an ethical guarantor for medical decision making. Secondly I will conclude that hard paternalism is justified in medical practice, thereby calling for a reversal of the prioritisation of informed consent procedures over the medical practitioner’s duty of care. (shrink)

The purpose of this dissertation is to identify some of the most pressing problems in the dominant contemporary approach to research ethics, and to devise an alternative approach that avoids these problems. I contend that the fundamental ethical values invoked in human research are often appealed to in contradictory or ambiguous ways, or in ways that do not adequately capture or do not show an adequate understanding of the specific ethical concerns of human research. One significant problem in this domain (...) is that values for ethical research are often unreflectively imported from medical therapy, producing ill-suited guidelines that cannot capture the different ethical situations that arise in the context of research. Furthermore, ethical guidelines in this area are often not developed with a sufficient understanding of the deep philosophical issues that they invoke. I suggest that we can address these problems through examining the fundamental ethical concerns of research on a philosophical level. This method will reveal severe problems with the approach to two of the ethical values underlying research; beneficence and respect for autonomy (or respect for persons). Once the nature of these problems has been revealed, and with reference to ethical problems that typically arise in the domain of research, I construct a coherent philosophical foundation for research ethics, which both avoids these deep-seated problems and better captures the ethical issues that arise in the domain of human research. I argue that we need to radically depart from the values of beneficence and autonomy/respect for persons as they are currently understood in the guidelines. We need an idea of beneficence that is clearly distinct from that which is used in the therapeutic medical context from which this notion is currently drawn. I also contend that we need to move away from autonomy as a central value in research ethics. I posit an alternative choice-based approach to informed consent which is concerned both with respecting agents’ freedom of choice, and also with their wellbeing, as providing a good means of protecting and promoting the interests of the individual research subject. Although these two imperatives are often thought to clash on a fundamental level, I will show that, in research ethics, they can be reconciled with minimal conflict. Though this represents a departure from the ethics of medical therapy, this approach is far more suited to the context of research. This theoretical basis for informed consent can help to clarify the ethical problems that are specific to this domain and provide us with relevant ethical guidance in research ethics. (shrink)