Bioethical Debate Research Articles

Needs-driven versus market-driven pharmaceutical innovation: the consortium for the development of a new medicine against malaria in Brazil.

The prevailing model for encouraging innovation based on patents and market-oriented raises at least two economic and ethical issues: it imposes barriers on individuals and developing countries governments' access to medicines by defining prices that do not match their income, and the unavailability of new or appropriate products to address the health problems of these populations. In the last decade, this scenario has undergone some changes due to the emergence of new actors, the contribution of aid resources, the introduction to the market of new products against neglected diseases, the development of new governmental healthcare policies and research programs, etc. One example of such initiatives is the Fixed-Dose Artesunate Combination Therapy (FACT) project consortium, which brought together institutions with different natures from both the North and the South, for the development of two antimalarial fixed-dose combinations recommended by the WHO - artesunate-amodiaquine (ASAQ) and artesunate-mefloquine (ASMQ). This paper proposes to describe and analyze the ASMQ consortium, which is the result of a new pharmaceutical development approach, based on a different paradigm - needs-driven instead of market-driven -, collaborative, with strategic participation of institutions from the South, funded by alternative resources (public and philanthropic). Thus, it represents an interesting object of study for bioethical debates on intellectual property and innovation, and its analysis is justified in light of the current debate on ways of stimulating needs-driven pharmaceutical innovation.

Las nuevas realidades del bios/zoe del cuerpo, entre la bioética y la biopolítica

<p>El texto propone la consideración de las profundas transformaciones ontemporáneas del bios/zoé y las consecuencias que tienen para el debate bioético y biopolítico, donde adquiere una especial relevancia el cuerpo. Estamos asistiendo a un giro ontológico profundo en nuestro relacionamiento con la naturaleza y entre nosotros mismos, mediado por el desarrollo creciente y acelerado de la tecnociencia en un contexto de globalización, que se evidencia en las transformaciones en el interior de los laboratorios y en el despliegue de una nueva forma de producción. El cuerpo se convierte en un eje central de debate de discursos, prácticas, estrategias y mecanismos del biopoder y la bioeconomía, al mismo tiempo como ámbito de manifestación de los más sentidos gritos de transformación sociopolítica alternativa.</p>

The value and pitfalls of speculation about science and technology in bioethics: the case of cognitive enhancement

In the debate on the ethics of the non-medical use of pharmaceuticals for cognitive performance enhancement in healthy individuals there is a clear division between those who view "cognitive enhancement" as ethically unproblematic and those who see such practices as fraught with ethical problems. Yet another, more subtle issue, relates to the relevance and quality of the contribution of scholarly bioethics to this debate. More specifically, how have various forms of speculation, anticipatory ethics, and methods to predict scientific trends and societal responses augmented or diminished this contribution? In this paper, we use the discussion of the ethics of cognitive enhancement to explore the positive and negative contribution of speculation in bioethics scholarship. First, we review and discuss how speculation has relied on different sets of assumptions regarding the non-medical use of stimulants, namely: (1) terminology and framing; (2) scientific aspects such as efficacy and safety; (3) estimates of prevalence and consequent normalization; and (4) the need for normative reflection and regulatory guidelines. Second, three methodological guideposts are proposed to alleviate some of the pitfalls of speculation: (1) acknowledge assumptions more explicitly and identify the value attributed to assumptions; (2) validate assumptions with interdisciplinary literature; and (3) adopt a broad perspective to promote more comprehensive reflection. We conclude that, through the examination of the controversy about cognitive enhancement, we can employ these methodological guideposts to enhance the value of contributions from bioethics and minimize potential epistemic and practical pitfalls in this case and perhaps in other areas of bioethical debate.

Ethics of truth telling: A socio-cultural perspective

Accompanied with various opinions across cultures, truth telling is a major debate in bioethics. Many studies have focused on the attitudes towards truth disclosure. We intend to review several relevant research studies, and discuss the issue through a clinical case consultation. It seems that while ‘the right to know’ is emphasised in bioethics, in some cultural contexts, health professionals fear communicating bad news. The patients may not receive information directly, because it is believed that the truth may make the patient feel hopeless and unable to cope with the problem. Nevertheless, some believe that sharing information may strengthen a trusting relationship between the patients and the medical professionals. Extensive efforts are in process in some societies to make patient's rights to know the truth as a natural part of the medical practice. However, in some cases, the principles of respect for patient autonomy require us to accept the patient's refusal to know the truth, with the provision that he/she assigns someone to receive information and make medical decisions on his/her behalf. In conclusion, it is suggested that healthcare professionals should not act on a unique presumption in all cases and they should explore what the real interest of the patient is, in order to respect individual autonomy.

Beyond Western Conservatives and Progressive Liberals: A Moderate Islamic View

LANGUAGE NOTE | Document text in EnglishProfessor David Solomon examines the cultural conflicts and conflicts in bioethics in the United States. Conservative Christians wish to establish a Western account of bioethics based on their religious view of dignity. In contrast, progressive liberals argue that bioethics should be based on pure reason or rational arguments, regardless of the features of any particular religion or culture. The aim of this commentary is to show that the cultural conflicts and divisions that afflict bioethical debate in Bangladesh are very similar to those in the United States. Moderate Muslims wish to maintain the core values of their Muslim culture and at the same time benefit from the modern development of science and technology. In contrast, progressive liberals, influenced by modern Western traditions, have sought to establish a moral philosophy based on secular reason in the Muslim country of Bangladesh. However, this individualist Western approach is at odds with the Muslim culture of Bangladesh, where non-individualist values are prevalent. In this commentary, it is also contended that the progressive liberals are unreasonably ambitious in attempting to establish universal bioethical norms for Muslim culture regardless of cultural differences.DOWNLOAD HISTORY | This article has been downloaded 46 times in Digital Commons before migrating into this platform.

Badania genetyczne w aspekcie międzykulturowym. Przypadek Havasupajów

Genetyka oraz medycyna w debatach bioetycznych są przeważnie przedstawiane jako zjawiska o charakterze globalnym, a ich praktyczne zastosowania jako opierające się na uniwersalnie akceptowanych wartościach, a przynajmniej takich, które powinny być powszechnie zaakceptowane, nawet jeśli tak w niektórych rejonach świata jeszcze nie jest (Chiny, Indie). Jednak zagadnienie naukowych badań genetycznych może być też widziane w zupełnie innym kontekście, a mianowicie, stanowić one mogą element szerszych relacji międzykulturowych. W tym znaczeniu badania genetyczne są wytworem kultury dominującej o charakterze globalnym, która stara się za ich pomocą biologicznie wykorzystać kultury lokalne, pozostałe jeszcze przy życiu ludy plemienne. Pojawiają się zarzuty o „biokolonializm”, „biopiractwo”, powrót rasizmu, zakamuflowaną eugenikę. Są one szczególnie nośne w niewielkich grupach etnicznych, które są narażone na częstsze występowanie określonych przypadłości zdrowotnych. Przykładem może być grupa amerykańskich Indian – Havasupajów – u których notuje się najczęstsze na świecie występowanie cukrzycy typu 2. Celem pracy jest omówienie problemów związanych z prowadzaniem badań naukowych z zakresu genetyki na przedstawicielach małych wspólnot lokalnych i ich konsekwencji społeczno-kulturowych na przykładzie badań z udziałem członków tego plemienia.

Utopías dicotómicas sobre los cuerpos sexuados

Hermaphrodites, intersexes, androgynes, transsexuals and homosexuals symbolise the place of the fissure, the border and dissent in relation to bodies and sexes/genders/ sexualities. They represent a privileged discursive space from where we can explore some of the certainties that have been produced and reproduced from the different fields of knowledge and power throughout Western history. The analysis of social and medical categories such as hermaphroditism, intersexuality, or the recently known as DSD shows us a complex and simultaneously controversial panorama that has, nevertheless, enough potential to shed some light on the performative role of social categories. Moreover, it allows us to go into a bioethical debate about the limits of medical practices, and to explore questions about the body’s control and normalisation, or about the incorporation of new technologies in recreating bodies and identities.

Paternalism in the Name of Autonomy

Different ideas of the normative relevance of autonomy can give rise to profoundly different action-guiding principles in healthcare. If autonomy is seen as a value rather than as a right, it can be argued that patients' decisions should sometimes be overruled in order to protect or promote their own autonomy. We refer to this as paternalism in the name of autonomy. In this paper, we discuss different elements of autonomy (decision-making capacity, efficiency, and authenticity) and arguments in favor of paternalism for the sake of autonomy that have been proposed in the bioethical debate. We argue that if autonomy is valuable, then paternalism for the sake of autonomy may be justified. However, policies allowing paternalism in the name of autonomy may be self-defeating.

Vile Sovereigns in Bioethical Debate

In this paper, I critically assess transhumanist philosophy and its influence in bioethics by turning to resources in the work of Michel Foucault. I begin by outlining transhumanism and drawing out some of the primary goals of transhumanist philosophy. In order to do so, I focus on the work of Nick Bostrom and Julian Savulescu, two prominent contributors to this thinking. I then move to explicate Foucault’s work, in the early iterations of the Abnormal lecture series, on the concept of vile sovereignty. Foucault used the concept of vile sovereignty to critique psychiatric witnesses that had been utilized in mid twentieth-century French courts of law. Turning back to transhumanism, I analyze transhumanist discourse on the basis of Foucault’s vile sovereignty. Transhumanists promote human enhancement in a way that rejects the body—especially the disabled body—and pose the question of what lives are worth living, as well as attempt to answer it. I conclude that because of the undeserved influence and ableism of transhumanism, it is important for feminist philosophers, philosophers of disability, and other disability scholars, who collide at the nexus of bioethical debate (especially with regard to reproductive technology and the body), to work together to intervene upon transhumanist discourse. Keywords: bioethics; enhancement; Foucault; transhumanism; ableism

SPERM ON ICE

Freezing technologies and extraction techniques make posthumous reproduction possible. This article discusses the bioethical and legal debates that surround the possession and use of dead men's sperm as they unfold in three select cases in Denmark and Australia. In the analysis we use feminist perspectives on reproduction to argue that the debates frame posthumous reproduction in light of four discursive configurations: The ‘child’, the ‘father’, the ‘widow’, and the ‘necrophile’. Whereas the performance of responsibility and maturity is key in the production of the ‘good’ widow in the Australian legal cases, the monstrous figure of the necrophile takes on a more prominent place in the Danish bioethical material. The legal and bioethical debates jointly, however, resurrect the nuclear, patriarchal family, while they also tend to re-naturalise heterosexed, romantic reproductive desire.

Un enfoque lógico-gradualista para la bioética

Almost any property or state of things involved in the bioethical debate —as in everyday life and in most sciences— is likely to have fuzzy edges and borderline cases, lacking precise lines of demarcation, as happens in the case of euthanasia, abortion, embryonic research, hybrids, animal experimentation, etc. etc. However, there is a profound discrepancy between a continuous and gradual reality, characterised by nuances and transitions, a reality in grey, and a logic (an analysis and description of it) that is bivalent, between absolute truth and complete falsehood, in black and white or “all-or-nothing” terms. As an alternative to the ‘principle of bivalence’ that permeates the standard approach to reality in general and bioethics in particular, we maintain the ‘principle of gradualism’, which says that everything is a matter of degree and therefore a fuzzy-logic approach is an appropriate theoretical method in bioethics.

The Value of Moral Theory for Addressing Ethical Questions When Reusing Qualitative Data

In this paper, I explore two ethical questions that arise in reusing qualitative data. First, how should secondary researchers respond when they uncover research practices of primary researchers that appear to be ethical breaches? Second, does data sharing alter researchers' moral relationships with their participants? I begin by reviewing a contemporary debate in qualitative research ethics. In this debate, the general view embraces ethical frameworks that place specific situations and context at centre stage, and relegate broad ethical theories to the background. As a comparison, I present a synopsis of a very similar debate in bioethics between particularist and universalist ethical frameworks. I employ several case studies in an attempt to demonstrate the value of universalist moral frameworks for moral reasoning while still sustaining a keen awareness of and sensitivity to specifics of situation and context. My claim is that ethical debates about reusing qualitative data (and perhaps for social resea...

The Bioethics of Digital Dystopias

This essay explores how two popular game franchises, BioShock and Portal, have addressed bioethical issues such as genetic modification, research ethics, and autonomy. BioShock and Portal are set in bioethical dystopias that simulate the absence of ethical restraint. The former is set in a city that that allows unregulated genetic modification, and the latter in a research facility controlled by overseers whose only concern is scientific progress. These simulations allow players to gain insight into bioethical issues and contribute to theoretical debates in bioethics by showing the possible consequences of violating bioethical values.

The Rhetoric of Enhancing the Human:

ABSTRACT The task of this article is to explore the current state of bioethical debates over enhancement technologies as articulated through its two dichotomous ideological camps. It aims to explain why the conservative and posthumanist movements have reached a point where they fail to engage with each other and how we can reconceptualize the bioethical endeavor in a way that does not force the public to adhere to a framing of enhancement technologies as either universally desirable or abhorrent. In order to do so, I turn to the work of Lacan and Deleuze to explain why attempts to define what is essentially human always enter what I call “tropological regress,” or the endless procession of linguistic tropes that are artificially linked to transcendental conceptions of “the good.” I aim to diagnose why conservative and posthumanist discourses on enhancement technologies find themselves irreconcilably opposed.

A aplicabilidade de pessoalidade é adequada na embriologia, de modo a considerar o embrião humano uma pessoa?

Neste artigo abordaremos a confrontação do conceito de pessoa humana entre a Igreja e certos grupos de cientistas, visto que existe atualmente um debate na bioética em torno da conveniência de eliminar tal conceito quanto a sua aplicabilidade ao embrião, justamente por haver uma divergência sobre o seu significado teórico. O esforço se concentrará em apresentar qual é o conceito teológico de pessoa humana imprescindindo paralelamente de uma bagagem filosófica e científica do termo, donde veremos certas discrepâncias.

Melhoramento humano biotecnocientífico: a escolha hermenêutica é uma maneira adequada de regulá-lo?

Uma forma de compreender o humano é pela sua biologia, a qual pode ser vista como ambígua. Por um lado, há características biológicas correlacionadas a capacidades extremamente especializadas e complexas, as quais abrem possibilidades que lhe são particulares, distinguindo-o ‘positivamente’ dos outros seres vivos. Por outro, como todo ser vivo, há características que tornam a vida humana finita e relativamente vulnerável, as quais costumam ser ‘negativamente’ interpretadas. Em ambos os casos, há características biológicas que, em si, não são boas nem más, apenas são, constituindo uma espécie biológica. No debate bioético, tem havido uma passagem direta de fatos para valores, de modo que o fato do humano ser biologicamente vulnerável justificaria uma opção valorativa pela superação de algumas características biológicas. Postulando uma tensão entre fatos e valores, nosso objetivo é mostrar a pertinência de submeter os meios biotecnocientíficos de melhoramento humano à regulação proveniente da proteção da liberdade de escolha baseada na autocompreensão existencial do indivíduo (que chamaremos de escolha hermenêutica), medida fundamental para evitar ou combater formas de opressão num contexto biopolítico.

Bioethics and religious bodies: Refusal of blood transfusions in Germany

The refusal of medical treatment is a recurrent topic in bioethical debates and Jehovah's Witnesses often constitute an exemplary case in this regard. The refusal of a potentially life-saving blood transfusion is a controversial choice that challenges the basic medical principle of acting in patients' best interests and often leads physicians to adopt paternalistic attitudes toward patients who refuse transfusion. However, neither existing bioethical nor historical and social sciences scholarship sufficiently addresses experiences of rank-and-file Witnesses in their dealings with the health care system. This article draws on results of a nine-month (2010, 2011–2012) ethnographic research on the relationship between religious, legal, ethical, and emotional issues emerging from the refusal of blood transfusions by Jehovah's Witnesses in Germany (mainly in Berlin). It shows how bioethical challenges are solved in practice by some German physicians and what they perceive to be the main goal of biomedicine: promoting the health or broadly understood well-being of patients. I argue that two different understandings of the concept of autonomy are at work here: autonomy based on reason and autonomy based on choice. The first is privileged by German physicians in line with a Kantian philosophical tradition and constitutional law; the second, paradoxically, is utilized by Jehovah's Witnesses in their version of the Anglo-Saxon Millian approach.

Forward--The Visual Culture of the Queer in the Clinic

This short essay provides an overview of the Visual Studies section of the special issue "Queer in the Clinic." Addressing the impact of visual culture on queer experiences in the clinic, the author offers thoughts on the graphic artwork of Edie Fake and Brain Cremins's essay included in this issue. Arguing that contemporary and historical visual assessments of the LGBTQ clinical subject are vital contributors to queer bioethical debates, she explains relevant concepts such as "radical somatic transformation," "the nature of bodily possibility," and Walter Benjamin's "world of secret affinities."

The Reconfiguration of the Relationship to Care for a Rare Disease: Neonatal Expended Screening in a Socio-material Perspective

Neonatal Screening (NBS) is a mass screening, secondary prevention policy aimed at detecting one or several often congenital disorders in all neonates in a given country. The French CF NBS programme is completely functional since the middle of 2003. Drawing its inspiration from the socio-material approach, this article advances a description and analysis of the interactions between the biomedical technologies used in neonatal cystic fibrosis screening and the resulting changes in clinical practice, the bioethical debate and finally in the interstice between voluntary individual consent to screening and the management of a population’s health. The analysis grid focuses on four dimensions: institutional, techno-scientific, regulatory and socio-professional. Backed up by a field survey conducted in the specialised healthcare centres, this study explores two major aspects of the repercussions of NBS: first, the genesis and institutionalisation of this public policy and the impact of a more flexible form of Evidence Based Medicine (EBM) and the sustained controversy on the neonatal screening programme uniting the community of cystic fibrosis paediatrics. This study suggests that institutional stability remains fragile and in this respect constitutes a paradoxical form of production with incompleteness and uncertainty as constituting factors.

The First Amendment Right to Speak about the Human Genome

This article explores whether laws that restrict the communication of genetic test results may, under certain circumstances, violate the First Amendment to the U.S. Constitution. The focus is whether investigators have a right to return results from non-CLIA-certified laboratories in situations where a research participant requests the results and the investigator is willing to share them but is concerned that doing so may violate regulations under the Clinical Laboratory Improvement Amendments of 1988 ("CLIA"). This article takes no position on whether investigators can be compelled to return results when they do not wish to do so. It examines only whether investigators may, not whether they must, return results to a willing research participant. The article: (1) surveys state and federal laws that block communication of genetic test results to research participants; (2) examines the historical use of speech restrictions as a tool for protecting human research subjects; (3) traces how First Amendment doctrine has evolved since the 1970s when foundations of modern research bioethics were laid; (4) inquires whether recent bioethical and policy debate has accorded due weight to the First Amendment. The article applies two common methods of legal analysis, textual and constitutional analysis. It concludes that the CLIA regulations, when properly construed, do not treat the return of results as an event that triggers CLIA's certification requirements. Moreover, there is a potential First Amendment problem in construing CLIA's research exception in a way that bans the return of results from non-CLIA-certified laboratories.