In recent years, an old challenge to informed consent has been rediscovered: the challenge of ignorance. Several authors argue that due to the presence of irreducible ignorance in certain treatments, giving informed consent to these treatments is not possible. The present paper examines in what ways ignorance is believed to prevent informed consent and which treatments are affected by that. At this, it becomes clear that if the challenge of ignorance truly holds, it poses a major problem to informed consent. (...) The paper argues, however, that from both an empirical and a theoretical point of view, it is not convincing that ignorance prevents informed consent. Still, it seems important that the presence of irreducible ignorance is openly discussed during the informed consent process. (shrink)

The notion of authenticity, i.e., being “genuine,” “real,” or “true to oneself,” is sometimes held as critical to a person’s autonomy, so that inauthenticity prevents the person from making autonomous decisions or leading an autonomous life. It has been pointed out that authenticity is difficult to observe in others. Therefore, judgments of inauthenticity have been found inadequate to underpin paternalistic interventions, among other things. This article delineates what justifies judgments of inauthenticity. It is argued that for persons who wish to (...) live according to the prevailing social and moral standards and desires that are seriously undesirable according to those standards, it is justified to judge that a desire is inauthentic to the extent that it is due to causal factors that are alien to the person and to the extent that it deviates from the person’s practical identity. The article contributes to a tradition of thinking about authenticity which is known mainly from Frankfurt and Dworkin, and bridges the gap between theoretical ideals of authenticity and real authenticity-related problems in practical biomedical settings. (shrink)

In their forthcoming article, Shavelson and colleagues (2023) identify a key ethical concern associated with medical aid-in-dying (MAiD) laws in the eleven US jurisdictions where the practice is le...

Hastings Center Report, Volume 52, Issue 5, Page 32-42, September–October 2022.

Respect for autonomy is a central moral principle in bioethics. It is sometimes argued that authenticity, i.e., being “real,” “genuine,” “true to oneself,” or similar, is crucial to a person’s autonomy. Patients sometimes make what appears to be inauthentic decisions, such as when anorexia nervosa patients refuse treatment to avoid gaining weight, despite that the risk of harm is very high. If such decisions are inauthentic, and therefore non-autonomous, it may be the case they should be overridden for paternalist reasons. (...) However, it is not clear what justifies the judgment that someone or something is inauthentic. This article discusses one recent theory of what justifies judgments of inauthenticity. It is argued that the theory is seriously limited, as it only provides guidance in three out of nine identified cases. There are at least six authenticity-related problems to be solved, and autonomy theorists thus have reason to engage with the topic of authenticity in practical biomedicine. (shrink)

This paper focuses on voluntary consent in the context of living organ donation. Arguing against three dominant views, I claim that voluntariness must not be equated with willingness, that voluntariness does not require the exercise of relational moral agency, and that, in cases of third-party pressure, voluntariness critically depends on the role of the surgeon and the medical team, and not just on the pressure from other people. I therefore argue that an adequate account of voluntary consent cannot understand voluntariness (...) as a purely psychological concept, that it has to be consistent with people pursuing various different conceptions of the good and that it needs to make the interaction between the person giving consent and the person receiving consent central to its approach. (shrink)

Participation in research is supposed to be voluntary and informed. Yet it is difficult to ensure people are adequately informed about the potential uses of their biological materials when they donate samples for future research. We propose a novel consent framework which we call “demonstrated consent” that leverages blockchain technology and generative AI to address this problem. In a demonstrated consent model, each donated sample is associated with a unique non-fungible token (NFT) on a blockchain, which records in its metadata (...) information about the planned and past uses of the sample in research, and is updated with each use of the sample. This information is accessible to a large language model (LLM) customized to present this information in an understandable and interactive manner. Thus, our model uses blockchain and generative AI technologies to track, make available, and explain information regarding planned and past uses of donated samples. (shrink)

Lowering compensation to research subjects to protect them from “undue inducement” is a misguided attempt to shoehorn a concern about exploitation into the framework of autonomy. We suggest that oversight bodies should be less concerned about undue influence than about exploitation of subjects. Avoiding exploitation in human subjects research requires not only increasing compensation, but enhancing the dignity of research participation.

Medical care of critically ill and injured infants and children globally should be based on best research evidence to ensure safe, efficacious treatment. In South Africa and other low and middle-income countries, research is needed to optimise care and ensure rational, equitable allocation of scare paediatric critical care resources.

BackgroundThe issue of stigma is very important in the battle against HIV/aids in Africa since it may affect patient attendance at healthcare centres for obtaining antiretroviral medications and regular medical check-ups. Stigmatization creates an unnecessary culture of secrecy and silence based on ignorance and fear of victimization. This study was designed to determine if there is external stigmatization of people living with HIV and AIDS by health care workers at a tertiary hospital in KwaZulu-Natal province, South Africa. The study investigated (...) the impact of knowledge of HIV/aids by HCWs on treatment of patients, as well as the comfort level and attitude of HCWs when rendering care to PLWHA.MethodsA descriptive cross sectional study was designed to collect data using an anonymous self-administered structured questionnaire from 334 HCWs. The study was conducted in clinical departments of a large multidisciplinary 922-bed tertiary care teaching hospital in Durban, KZN.ResultsOverall HCWs had an above average knowledge about HIV/aids although some gaps in knowledge were identified. Tests of statistical significance showed that there was association between level of education and knowledge of HIV/aids ; occupation and knowledge of HIV/aids ; and gender and knowledge of HIV/aids. Test for comfort level was only significant for gender, with males showing more comfort and empathy when dealing with PLWHA. The study also revealed that patients were sometimes tested for HIV without informed consent before surgery, due to fear of being infected, and there was some gossiping about patients' HIV status by HCWs, thereby compromising patient confidentiality. The majority of HCWs showed a willingness to report incidents of stigmatization and discrimination to higher authorities, for better monitoring and control.ConclusionsAlthough knowledge, attitude and comfort level of HCWs taking care of PLWHA was above average, enforcement of existing antidiscrimination laws and continuing education in medical ethics and healthcare law, would greatly improve the performance of HCWs taking care of PLWHAs. More psychological support and counselling should be provided to HCWs, to further reduce the impact of stigmatization and discrimination against PLWHA. (shrink)

Crowdsourcing is an increasingly popular method for researchers in the social and behavioral sciences, including experimental philosophy, to recruit survey respondents. Crowdsourcing platforms, such as Amazon’s Mechanical Turk (MTurk), have been seen as a way to produce high quality survey data both quickly and cheaply. However, in the last few years, a number of authors have claimed that the low pay rates on MTurk are morally unacceptable. In this paper, I explore some of the methodological implications for online experimental philosophy (...) research if, in fact, typical pay practices on MTurk are morally impermissible. I argue that the most straightforward solution to this apparent moral problem—paying survey respondents more and relying only on “high reputation” respondents—will likely increase the number of subjects who have previous experience with survey materials and thus are “non-naïve” with respect to those materials. I then discuss some likely effects that this increase in experimental non-naivete will have on some aspects of the “negative” program in experimental philosophy, focusing in particular on recent debates about philosophical expertise. (shrink)

The American Journal of Bioethics, Volume 11, Issue 8, Page 27-29, August 2011.

Next SectionMaking threats and offers to patients is a strategy used in community mental healthcare to increase treatment adherence. In this paper, an ethical analysis of these types of proposal is presented. It is argued (1) that the primary ethical consideration is to identify the professional duties of care held by those working in community mental health because the nature of these duties will enable a threat to be differentiated from an offer, (2) that threatening to act in a way (...) that would equate with a failure to uphold the requirements of these duties is wrong, irrespective of the benefit accrued through treatment adherence and (3) that making offers to patients raises a number of secondary ethical considerations that need to be judged on their own merit in the context of individual patient care. The paper concludes by considering the implications of these arguments, setting out a pathway designed to assist community mental healthcare practitioners to determine whether making a specific proposal to a patient is right or wrong. (shrink)

The American Journal of Bioethics, Volume 11, Issue 8, Page 31-33, August 2011.

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

Some maintain that voluntariness is a value-neutral concept. On that view, someone acts involuntarily if subject to a controlling influence or has no acceptable alternatives. I argue that a value-neutral conception of voluntariness cannot explain when and why consent is invalid and that we need a moralized account of voluntariness. On that view, most concerns about the voluntariness of consent to participate in research are not well founded.

In 2008 UK legislation was amended to enable the use of deferred consent for paediatric emergency care (EC) trials in recognition of the practical and ethical difficulties of obtaining prospective consent in an emergency situation. However, ambiguity about how to make deferred consent acceptable to parents, children and practitioners remains. In particular, little is known about practitioners’ views and experiences of seeking deferred consent in this setting.

This paper focuses on consent and third-party coercion, viz. cases in which a person consents to another person performing a certain act because a third party coerced her into doing so. I argue that, in these cases, the validity of consent depends on the behavior of the recipient of consent rather than the third party’s coercion taken separately, and I will specify the conditions under which consent is invalid. My view, which is a novel version of what I call a (...) Recipient-Focus-View, holds that coercion invalidates consent only if consent was ‘obtained by’ coercion, but not if consent was ‘merely motivated by’ coercion. I explain and support my view on the basis that it best reconciles an unnoticed tension between two fundamental principles in the debate on consent and that it can deal with cases that undermine other Recipient-Focus-Views. (shrink)

ABSTRACT:If an employee is committed to his firm—if he is “attached” or “bound” to it—then his firm may be able to obtain a discount on his labor. This paper asks: Is it wrong for firms to do so? If we understand just or fair pay solely in terms of voluntary agreements between employers and employees, the answer seems to be ‘no.’ Against this, I argue that, in some cases, it is ‘yes.’ In particular, it is wrong for firms to try (...) to obtain discounts on their committed employees’ labor when their employees reasonably expect that they will not try to obtain them. In the process, I probe the limits of exploitation and question the relevance of contribution to fairness in compensation. (shrink)

Governments and policy-makers have of late displayed renewed attention to behavioural research in an attempt to achieve a range of policy goals, including health promotion. In particular, approaches which could be labelled as ‘nudges’ have gained traction with policy-makers. A range of objections to nudging have been raised in the literature. These include claims that nudges undermine autonomy and liberty, may lead to a decrease in responsibility in decision-making, lack transparency, involve deception, and involve manipulation, potentially occasioning coercion. In this (...) article I focus on claims of coercion, examining nudges within two of the main approaches to coercion—the pressure approach and the more recent enforcement approach. I argue that coercion entails an element of control over the behaviour of agents which is not plausibly displayed by the kinds of serious examples of nudges posited in the literature. (shrink)

The American Journal of Bioethics, Volume 11, Issue 8, Page 33-35, August 2011.

The American Journal of Bioethics, Volume 11, Issue 8, Page 23-24, August 2011.

Successful clinical research outcomes are essential for improving patient care. Achieving this goal, however, implies an effective informed consent process for potential research participants. This article traces the development of ethical and legal requirements of informed consent and examines the effectiveness of past and current practice. The authors propose the use of innovative monitoring methodologies to improve outcomes while safeguarding consent relationships and activities. Additional rigorous research will help direct policy efforts at standardizing quality improvement processes.

Decentralized clinical trials (DCTs) have the potential to advance the conduct of clinical trials, but raise several ethical issues, including obtaining valid informed consent. The debate on the ethical issues resulting from digitalization is predominantly focused on direct risks relating to for example data protection, safety, and data quality. We submit however, that a broader view on ethical aspects of DCTs is needed to touch upon the new challenges that come with the DCT practice. Digitalization has impacts that go beyond (...) its direct purposes, by shaping behaviors, experiences, social relations, and values. We examine four elements of the informed consent procedure that are affected by DCTs, while taking these soft impacts of technologies into account: (i) informing participants and testing understanding, (ii) freedoms in relation to responsibilities and burdens, (iii) trust in participant-researcher relations, and (iv) impacts on the concept of privacy. Our analysis reveals that a broad view is key for optimal conduct of DCTs. In addition, it provides insight into the ethical impacts of DCTs on informed consent. Technologies such as DCTs potentially have profound impacts which are not immediately addressed by the existing regulatory frameworks, but nonetheless important to recognize. These findings can guide future practices of DCTs to foster the important values of clinical research in this novel approach for conducting clinical trials. (shrink)

Respect for patient autonomy is paramount in resolving ethical tensions in end-of-life care. The concept of relational autonomy has contributed to this debate; however, scholars often use this concept in a fragmented manner. This leads to partial answers on ascertaining patients’ true wishes, meaningfully engaging patients’ significant others, balancing interests among patients and significant others, and determining clinicians’ obligations to change patients’ unconventional convictions to enhance patient autonomy. A satisfactory solution based on relational autonomy must incorporate patients’ competence (apart from (...) decisional capacity), authenticity (their true desires or beliefs) and the involvement level of their significant others. To that end, we argue that John Christman’s procedural approach to relational autonomy provides critical insights, such as the diachronic or socio-historical personhood, sustained critical reflection and his recent explication of the nature of asymmetrical relationships and helpful interlocutors. This study reviews Christman’s account, proposes minor modifications and advocates for an integrated three-dimensional model for medical decision-making. Clarifying the relationship among the three elements promotes an ethical framework with a coherent understanding of relational autonomy. This model not only provides a descriptive and normative framework for end-of-life care practice but also reconsiders the nature of the clinician–patient relationship and its normative implications. We further present a case study to illustrate the merits of our proposed model. Altogether, our proposal will help navigate complex medical decision-making, foster trust and negotiate shared values between patients and their significant others, particularly in end-of-life care. (shrink)

This paper scrutinizes the tension between individuals’ rights and paternalism. I will argue that no normative account that includes rights of individuals can justify hard paternalism since the infringement of a right can only be justified with the right or interest of another person, which is never the case in hard paternalism. Justifications of hard paternalistic actions generally include a deviation from the very idea of having rights. The paper first introduces Tom Beauchamp as the most famous contemporary hard paternalist (...) by outlining his moral theory (principlism) and showing why it, as it stands, has to allow for hard paternalism. Secondly, the paper focuses on the notion of rights within principlism. I will employ traditional theories of rights to make sense of rights in principlism. Unfortunately, this attempt fails. In the third part, then, I claim that rights can only be limited with reference to the rights or interests of others. This structure is the very point of rights, it is their bite. I will argue for this claim and show its implications. The most important implication is that not only principlism, but every normative theory that includes rights of individuals, has to abolish hard paternalism. (shrink)

Metaphilosophy, Volume 53, Issue 1, Page 45-52, January 2022.

The American Journal of Bioethics, Volume 11, Issue 8, Page 17-18, August 2011.

Morain and colleagues (2019) advocate rethinking the rather dogmatic guidance from both regulatory authorities and professional associations cautioning physician-investigators against obtaining inf...

The American Journal of Bioethics, Volume 11, Issue 8, Page 21-22, August 2011.

The American Journal of Bioethics, Volume 11, Issue 8, Page 19-20, August 2011.

The American Journal of Bioethics, Volume 11, Issue 8, Page W1-W3, August 2011.

The American Journal of Bioethics, Volume 11, Issue 8, Page 29-30, August 2011.

There appears to be a conflict between global bioethical principles and the local understanding and application of these principles, but this conflict has misleadingly been characterized through the east–west dichotomy. This dichotomy portrays bioethical principles as western and as alien to non-western cultures. In this paper, I present reasons to reject the east–west dichotomy. Using the discussion around the principle of informed consent as an example, I propose that while bioethical values are common, bioethical governance must display a certain flexibility (...) akin to Aristotle’s metaphor about the Lesbian rule. Such flexibility combined with a deeper understanding of the lived experiences of bioethical subjects might lead to the purging of tensions between global and local, giving us Glocal Bioethics. (shrink)

In their article “The Concept of Voluntary Consent,” Robert Nelson and colleagues (2011) argue for two necessary and jointly sufficient conditions for voluntary action: intentionality, and substantial freedom from controlling influences. They propose an instrument to empirically measure voluntariness, the Decision Making Control Instrument. I argue that (1) their conceptual analysis of intentionality and controlling influences needs expansion in light of the growing use of behavioral economics principles to change individual and public health behaviors (growing in part by the designation (...) of “The Science of Behavior Change” as a new National Institutes of Health [NIH] Roadmap Activity); and (2) that their measure of voluntariness that relies on self-perceived intentionality and extent of control is unreliable, given findings from behavioral economics and cognitive science that show that our perceptions about the intentionality and control of our own and others’ decisions and actions are remarkably skewed and un-insightful. (shrink)

Mainstream breast cancer social movements such as that of Susan G. Komen have called on all women to race or fight for the cure for breast cancer. They suggest that the fight can be won by buying and wearing pink ribbons, taking part in races and walks, donating money, and participating in research. For some patients with breast cancer, research participation may involve non-diagnostic tumor biopsies. While this clinical research is performed in the hope of gaining new knowledge through the (...) removal and study of breast cancer tissue, these procedures have been heavily criticized because they offer little potential benefit to the patient providing the tissue (Helft and Daugherty 2006; Kimmelman et al. 2012;... (shrink)