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The epistemic harms of direct-to-consumer genetic tests
AbstractIn this paper, I provide an epistemic evaluation of the harms that result from the widespread marketing of direct-to-consumer (DTC) genetic tests. While genetic tests are a valuable accessory diagnostic tool when ordered by a medical practitioner, there are different implications when they are sold directly to consumers. I aim to show that there are both epistemic and non-epistemic harms associated with the widespread commoditization of DTC genetic tests. I argue that the epistemic harms produced by DTC genetic tests have been disregarded in discussions on the topic. Drawing on the notion of contributory epistemic ...
Source: Medicine, Healthcare and Philosophy - July 25, 2023 Category: Medical Ethics Source Type: research

Towards a concept of embodied autonomy: In what ways can a patient ’s body contribute to the autonomy of medical decisions?
Abstract“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of t he body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy in this paper is aligned with traditional theories that conceive autonomy in terms of an individual’s capaci...
Source: Medicine, Healthcare and Philosophy - June 9, 2023 Category: Medical Ethics Source Type: research

Adaptation and illness severity: the significance of suffering
AbstractAdaptation to illness, and its relevance for distribution in health care, has been the subject of vigorous debate. In this paper I examine an aspect of this discussion that seems so far to have been overlooked: that some illnesses are difficult, or even impossible, to adapt to. This matters because adaptation reduces suffering. Illness severity is a priority setting criterion in several countries. When considering severity, we are interested in the extent to which an illness makes a person worse-off. I argue that no plausible theory of well-being can disregard suffering when determining to what extent someone is wo...
Source: Medicine, Healthcare and Philosophy - May 13, 2023 Category: Medical Ethics Source Type: research

What makes a health system good? From cost-effectiveness analysis to ethical improvement in health systems
AbstractFair allocation of scarce healthcare resources has been much studied within philosophy and bioethics, but analysis has focused on a narrow range of cases. The Covid-19 pandemic provided significant new challenges, making powerfully visible the extent to which health systems can be fragile, and how scarcities within crucial elements of interlinked care pathways can lead to cascading failures. Health system resilience, while previously a key topic in global health, can now be seen to be a vital concern in high-income countries too. Unfortunately, mainstream philosophical approaches to the ethics of rationing and prio...
Source: Medicine, Healthcare and Philosophy - May 12, 2023 Category: Medical Ethics Source Type: research

From biocolonialism to emancipation: considerations on ethical and culturally respectful omics research with indigenous Australians
AbstractAs part of a (bio)colonial project, the biological information of Indigenous Peoples has historically been under scientific scrutiny, with very limited benefits for communities and donors. Negative past experiences have contributed to further exclude Indigenous communities from novel developments in the field of omics research. Over the past decade, new guidelines, reflections, and projects of genetic research with Indigenous Peoples have flourished in Australia, providing opportunities to move the field into a place of respect and ethical relationships. This review explores the ethical and cultural implications of...
Source: Medicine, Healthcare and Philosophy - May 12, 2023 Category: Medical Ethics Source Type: research

Relating to foetal persons: why women ’s Voices come first and last, but not alone in Abortion debates
This article argues for a relational ontological construction of human personhood as the basis of foetal personhood. This approach takes seriously the literature of pregnancy loss and the lived experiences of p regnant persons. Focusing on the manner in which persons relate to early foetuses (especially pregnant persons), provides a coherent ground for distinct foetal value. Importantly, this approach is both simple and intuitive. Therefore, it can be more easily adopted by middle. To counter an implied eq uality of human relationality, the article argues for a clear hierarchy based on relational proximity that affirms pre...
Source: Medicine, Healthcare and Philosophy - May 12, 2023 Category: Medical Ethics Source Type: research

Engaging otherness: care ethics radical perspectives on empathy
AbstractThroughout the years, care ethicists have raised concerns that prevalent definitions of empathy fail to adequately address the problem of otherness. They have proposed alternative conceptualizations of empathy that aim to acknowledge individual differences, help to extend care beyond one ’s inner circle, and develop a critical awareness of biases and prejudices. We explore three such alternatives: Noddings’ concept of engrossment, Meyers’ account of broad empathy, and Baart’s concept of perspective-shifting. Based on these accounts, we explain that care ethics promotes a con ceptualization of empathy that i...
Source: Medicine, Healthcare and Philosophy - May 12, 2023 Category: Medical Ethics Source Type: research

What does it mean to call a medical device invasive?
AbstractMedical devices are often referred to as being invasive or non-invasive. Though invasiveness is relevant, and central, to how devices are understood and regarded in medicine and bioethics, a consensus concept or definition of invasiveness is lacking. To begin to address this problem, this essay explores four possible descriptive meanings of invasiveness: how devices are introduced to the body, where they are located in the body, whether they are foreign to the body, and how they change the body. An argument is offered that invasiveness is not purely descriptive, but implicates normative concepts of danger, intrusio...
Source: Medicine, Healthcare and Philosophy - May 3, 2023 Category: Medical Ethics Source Type: research

Ethical challenges of clinical trials with a repurposed drug in outbreaks
AbstractDrug repurposing is a strategy of identifying new potential uses for already existing drugs. Many researchers adopted this method to identify treatment or prevention during the COVID-19 pandemic. However, despite the considerable number of repurposed drugs that were evaluated, only some of them were labeled for new indications. In this article, we present the case of amantadine, a drug commonly used in neurology that attracted new attention during the COVID-19 outbreak. This example illustrates some of the ethical challenges associated with the launch of clinical trials to evaluate already approved drugs. In our di...
Source: Medicine, Healthcare and Philosophy - March 7, 2023 Category: Medical Ethics Source Type: research

The role of knowledge and medical involvement in the context of informed consent: a curse or a blessing?
AbstractInformed consent (IC) is a key patients ’ right. It gives patients the opportunity to access relevant information/knowledge and to support their decision-making role in partnership with clinicians. Despite this promising account of IC, the relationship between ‘knowledge’, as derived from IC, and the role of clinicians is often misu nderstood. I offer two examples of this: (1) the prenatal testing and screening for disabilities; (2) the consent process in the abortion context. In the first example, IC is often over-medicalized, that is to say the disclosure of information appears to be strongly in the clinici...
Source: Medicine, Healthcare and Philosophy - March 1, 2023 Category: Medical Ethics Source Type: research

Towards trust-based governance of health data research
Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within a European research consortium demonstrate a gap between the aims of the regulation and its effects in practice. Namely, strictly formalised data protection requirements may cause routinisation among researchers instead of substantive ethical reflection, and may crowd out trust between actors in the health data research e...
Source: Medicine, Healthcare and Philosophy - January 12, 2023 Category: Medical Ethics Source Type: research

Empowerment through health self-testing apps? Revisiting empowerment as a process
This article first demonstrates the absence of empowerment conceptualisations in the context of self-testing apps by engaging with empowerment literature. It then contrasts the service these apps provide with two widely cited empowerment definitions by the WHO, which describe the term as a process that, broadly, leads to knowledge and control of health decisions. We conclude that self-testing apps can only partly empower their users, as they, we argue, do not provide the type of knowledge and control the WHO definitions describe. More importantly, we observe that this shortcoming stems from the fact that in the literature ...
Source: Medicine, Healthcare and Philosophy - January 2, 2023 Category: Medical Ethics Source Type: research

Correction to: On the relation between decision quality and autonomy in times of patient ‑centered care: a case study
(Source: Medicine, Healthcare and Philosophy)
Source: Medicine, Healthcare and Philosophy - December 5, 2022 Category: Medical Ethics Source Type: research

Initial heritable genome editing: mapping a responsible pathway from basic research to the clinic
AbstractFollowing the Second Summit on Human Gene Editing in Hong Kong in 2018, where the birth of two girls with germline genome editing was revealed, the need for a responsible pathway to the clinical application of human germline genome editing has been repeatedly emphasised. This paper aims to contribute to the ongoing discussion on research ethics issues in germline genome editing by exploring key issues related to the initial applications of CRISPR in reproductive medicine. Following an overview of the current discussion on bringing germline genome editing into clinical practice, we outline the specific challenges as...
Source: Medicine, Healthcare and Philosophy - November 22, 2022 Category: Medical Ethics Source Type: research

Reductionist methodology and the ambiguity of the categories of race and ethnicity in biomedical research: an exploratory study of recent evidence
AbstractIn this article, we analyse how researchers use the categories of race and ethnicity with reference to genetics and genomics. We show that there is still considerable conceptual “messiness” (despite the wide-ranging and popular debate on the subject) when it comes to the use of ethnoracial categories in genetics and genomics that among other things makes it difficult to properly compare and interpret research using ethnoracial categories, as well as draw conclusions fro m them. Finally, we briefly reconstruct some of the biases of reductionism to which geneticists (as well as other researchers referring to gene...
Source: Medicine, Healthcare and Philosophy - November 9, 2022 Category: Medical Ethics Source Type: research