An autonomy-based approach to assisted suicide: a way to avoid the expressivist objection against assisted dying laws
In several jurisdictions, irremediable suffering from a medical condition is a legal requirement for access to assisted dying. According to the expressivist objection, allowing assisted dying for a specific group of persons, such as those with irremediable medical conditions, expresses the judgment that their lives are not worth living. While the expressivist objection has often been used to argue that assisted dying should not be legalised, I show that there is an alternative solution available to its proponents. An autonomy-based approach to assisted suicide regards the provision of assisted suicide (but not euthanasia) ...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Braun, E. Tags: Open access Original research Source Type: research
Assent and reification: a response to the commentators
My paper on assent and reification in research involving adults with impairments of capacity and/or communication (AWIC)1 drew many thoughtful and insightful responses. I am grateful to all who submitted commentaries. Most agreed in principle that AWIC could be better represented in medical research. However, several commentators felt that further clarification was needed in terms of what assent is and how it should be obtained and operationalised.2 I fully agree that if increased representation of AWIC is to come about through an assent-based approach, further clarificatory work is needed, and am glad to think my paper ma...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Smajdor, A. Tags: Commentary Source Type: research
Understanding the autonomy of adults with impaired capacity through dialogue
We describe how we... (Source: Journal of Medical Ethics)
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Wardrope, A., Bell, S., Blackburn, D., Dickson, J., Reuber, M., Walker, T. Tags: Commentary Source Type: research
What should recognition entail? Responding to the reification of autonomy and vulnerability in medical research
Smajdor claims that ‘recognition’ is the solution to the ‘reifying attitude’ that results from ‘the urge to protect "vulnerable" people through exclusion from research’.1 Specifically, for Smajdor, an assent-based framework—as a means of recognising and respecting the autonomy of vulnerable individuals who would otherwise be excluded from biomedical research—provides such recognition. If the sole reason for the reification of vulnerable individuals in research contexts is a need to protect them due to their inability to fulfil standards for informed consent, then recognition ...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Lewis, J., Holm, S. Tags: Commentary Source Type: research
Vulnerable person investigation plan (VIP) to optimise inclusion in clinical trials
Smajdor addresses the problem of inferior clinical outcomes among adults with impairments of capacity to give informed consent (AWIC). She notes that AWIC are generally excluded from clinical trials to protect them against harms and avoid exploitation and claims there is a causal link between involvement in clinical trials and favourable outcomes. She argues, given this link, that we should increase AWIC representation in clinical trials and can justifiably do so by recognising the capacity of AWIC to assent. AWIC form a diverse group, with multiple aetiologies, including, for example, Down syndrome, traumatic brain injury...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Raburn, I. C., Bunnik, E. M., Cronin, A. J. Tags: Commentary Source Type: research
Assent: going beyond acknowledgement for fair inclusion
In her article Reification and assent in research involving those who lack capacity, Anna Smajdor shows how excluding adults with impairments of capacity (AWICs) to protect them from the risks of medical research has the paradoxical effect of harming them by reifying them.1 While the medical risks of excluding vulnerable populations in general from medical research are well known, the main risk being the creation of therapeutic orphans, the risk of reifying these populations is less discussed. Hence, we commend Smajdor for introducing an essential nuance in the debate on inclusion of AWICs in medical research. We also agre...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Cavolo, A., Gastmans, C. Tags: Commentary Source Type: research
Assent and vulnerability in patients who lack capacity
Smajdor’s Reification and Assent in Research Involving Those Who lack Capacity claims, among other things, that ‘adults who cannot give informed consent may nevertheless have the ability to assent and dissent, and that these capacities are morally important in the context of research’.1 More pointedly, she suggests we can rely upon Gillick competence, or that ‘it is worth thinking about why the same trajectory [as children] has not been evident in the context of [adults with impairments of capacity to give informed consent (AWIC)]’.1 I argue that her likening assent in AWIC to assent in childr...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Riddle, C. A. Tags: Commentary Source Type: research
Assent to research by the formerly competent: necessary and sufficient?
Anna Smajdor offers a fresh perspective on why assent is morally required in research practices involving people who (are considered to) lack the capacity to consent.1 Smajdor holds that seeking (and documenting) assent can be a mechanism to recognise those who (are considered to) lack the capacity to consent as participants ‘in our moral sphere’.1 Smajdor suggests that this approach can function as a counter to the ‘reifying’ attitudes (often) taken towards people who (are judged to) lack the capacity to consent.1 Smajdor’s approach also offers novel resources to overcome what Giles Birchley ...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Soofi, H. Tags: Commentary Source Type: research
Call for moral recognition as part of paediatric assent
In ‘Reification and Assent in Research Involving Those Who Lack Capacity’, Smajdor argues that adults with impaired capacity to grant informed consent (AWIC) are often excluded from participating in biomedical research because they cannot provide informed consent, leading to decreased chances AWIC will benefit from such research. Smajdor uses Honneth’s concept of reification to propose that securing assent (rather than consent) in cases involving AWIC offers patients moral recognition that is not tied to their capacities. Assent provides this recognition by including the patient in a shared moral sphere, ...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Smith, J., Blumenthal-Barby, J. Tags: Commentary Source Type: research
Reification and assent in research involving those who lack capacity
In applied ethics, and in medical treatment and research, the question of how we should treat others is a central problem. In this paper, I address the ethical role of assent in research involving human beings who lack capacity. I start by thinking about why consent is ethically important, and consider what happens when consent is not possible. Drawing on the work of the German philosopher Honneth, I discuss the concept of reification—a phenomenon that manifests itself when we fail to observe or respond to our fellow humans’ need for recognition. I suggest that assent is a way of responding to this moral need f...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Smajdor, A. Tags: Feature article Source Type: research
Preserving womens reproductive autonomy while promoting the rights of people with disabilities?: the case of Heidi Crowter and Maire Lea-Wilson in the light of NIPT debates in England, France and Germany
On July 2021, the UK High Court of Justice heard the Case CO/2066/2020 on the application of Heidi Crowter who lives with Down’s syndrome, and Máire Lea-Wilson whose son Aidan has Down’s syndrome. Crowter and Lea-Wilson, with the support of the disability rights campaign, ‘Don’t Screen Us Out’, have been taking legal action against the Secretary of State for Health and Social Care (the UK Government) for a review of the 1967 Abortion Act: the removal of section 1(1)(d) making termination of pregnancy lawful for ‘severe’ fetal indications detected after 24 weeks' gestation. O...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Perrot, A., Horn, R. Tags: Open access Current controversy Source Type: research
Equipoise, standard of care and consent: responding to the authorisation of new COVID-19 treatments in randomised controlled trials
In response to the COVID-19 pandemic, large-scale research and pharmaceutical regulatory processes have proceeded at a dramatically increased pace with new and effective, evidence-based COVID-19 interventions rapidly making their way into the clinic. However, the swift generation of high-quality evidence and the efficient processing of regulatory authorisation have given rise to more specific and complex versions of well-known research ethics issues. In this paper, we identify three such issues by focusing on the authorisation of molnupiravir, a novel antiviral medicine aimed at reducing the ability of SARS-CoV-2 to multip...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Holm, S., Lewis, J., Dal-Re, R. Tags: Editor's choice, COVID-19 Current controversy Source Type: research
The age limit for euthanasia requests in the Netherlands: a Delphi study among paediatric experts
Conclusion
This study shows that the age limit of 12 years in the Dutch Euthanasia Act is too strong according to paediatric experts. Letting go of the age limit or lowering the age limit combined with adequate capacity assessment for minors younger than 12 are options that should be discussed further. (Source: Journal of Medical Ethics)
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: de Keijzer, S. C., Widdershoven, G., Verhagen, A. A. E., Pasman, H. R. Tags: Clinical ethics Source Type: research
Watching the watchmen: changing tides in the oversight of medical assistance in dying
The recent wave of medical assistance in dying legalisation raises questions about proper oversight of the practice as new systems for data collection, case assessment and public reporting emerge. Newer systems, such as in Spain, New Zealand and Colombia, are eschewing the retrospective approach used for case assessment in older systems, particularly those in the Netherlands, Belgium and the USA, in favour of an approach requiring more extensive review prior to the procedure. This shift aims to increase compliance with each jurisdiction’s specific safeguards and legal criteria as well as to protect vulnerable patient...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Riley, S. Tags: Clinical ethics Source Type: research
Can identity-relative paternalism shift the focus from the principle of autonomy?
Mill’s proscription that ‘the only purpose for which power can be rightfully exercised over any member of a civilised community, against his will, is to prevent harm to others’ has become almost axiomatic in bioethics.1 Bolstered by the rise of patient autonomy during the mid-20th century, Millian conceptions of freedom have become so embedded in bioethical theory, that attempts to justify paternalism have typically involved making one of two claims. Either, they have involved refuting the significance of autonomy as an ethical principle, and questioning whether it should always be taken to outweigh other...
Source: Journal of Medical Ethics - June 22, 2023 Category: Medical Ethics Authors: Auckland, C. Tags: Editorial Source Type: research
