Our primary focus is on analysis of the concept of voluntariness, with a secondary focus on the implications of our analysis for the concept and the requirements of voluntary informed consent. We propose that two necessary and jointly sufficient conditions must be satisfied for an action to be voluntary: intentionality, and substantial freedom from controlling influences. We reject authenticity as a necessary condition of voluntary action, and we note that constraining situations may or may not undermine voluntariness, depending on the (...) circumstances and the psychological capacities of agents. We compare and evaluate several accounts of voluntariness and argue that our view, unlike other treatments in bioethics, is not a value-laden theory. We also discuss the empirical assessment of individuals? perceptions of the degrees of noncontrol and self-control. We propose use of a particular Decision Making Control Instrument. Empirical research using this instrument can provide data that will help establish appropriate policies and procedures for obtaining voluntary consent to research. (shrink)

Since children are considered incapable ofgiving informed consent to participate inresearch, regulations require that bothparental permission and the assent of thepotential child subject be obtained. Assent andpermission are uniquely bound together, eachserving a different purpose. Parentalpermission protects the child from assumingunreasonable risks. Assent demonstrates respectfor the child and his developing autonomy. Inorder to give meaningful assent, the child mustunderstand that procedures will be performed,voluntarily choose to undergo the procedures,and communicate this choice. Understanding theelements of informed consent has been theparadigm for (...) assessing capacity to give assent.This method leaves the youngest, leastcognitively mature children vulnerable towaiver of assent and forced researchparticipation. Voluntariness can also becompromised by the influence of authorityfigures who can exert undue influence andcoerce children to participate in research. This paper discusses factors that may influencethe decision to give assent/permission,potential parent-child conflict in theassent/permission process and how it isresolved, and potential parental undueinfluence on research participation. Theseissues are illustrated with quotations drawnfrom a larger qualitative study of parentalpermission and child assent (data notpresented). We suggest a developmentalapproach, viewing assent as a continuum rangingfrom mere affirmation in the youngest childrento the equivalent of the informed consentprocess in the mature adolescent. (shrink)

To counter the pandemic caused by severe acute respiratory syndrome coronavirus 2, some have proposed accelerating SARS-CoV-2 vaccine development through controlled human infection trials. These trials would involve the deliberate exposure of relatively few young, healthy volunteers to SARS-CoV-2. We defend this proposal against the charge that there is still too much uncertainty surrounding the risks of COVID-19 to responsibly run such a trial.

Hastings Center Report, Volume 52, Issue 3, Page 18-29, May–June 2022.

The relationship between construal and redundancy has not been previously explored empirically. Russian aspect allows speakers to construe situations as either Perfective or Imperfective, but it is not clear to what extent aspect is determined by context and therefore redundant. We investigate the relationship between redundancy and open construal by surveying 501 native Russian speakers who rated the acceptability of both Perfective and Imperfective verb forms in complete extensive authentic contexts. We find that aspect is largely redundant in 81% of (...) uses, and in 17% of contexts aspect is relatively open to construal. We contend that anchoring in redundant contexts likely facilitates the independence of construal in contexts with less redundancy. However further research is needed to discover what makes contexts redundant since known cues for aspect are absent in the majority of such contexts. Native speakers are fairly consistent in giving the original aspect high ratings, but less consistent in rating the non-original aspect, indicating potential problems in testing the reactions of speakers to non-authentic data. (shrink)

Modern antiretroviral therapies are capable of suppressing HIV in the bloodstream to undetectable levels. Nonetheless, people living with HIV must maintain lifelong adherence to ART to avoid the re-emergence of the infection. So despite the existence and efficacy of ART, there is still substantial interest in development of a cure. But HIV cure trials can be risky, their success is as of yet unlikely, and the medical gain of being cured is limited against a baseline of ART access. The medical (...) prospect associated with participation in cure research thus look poor. Are the risks and burdens that HIV cure research places on participants so high that it is unethical, at present, to conduct it? In this paper, I answer ‘no’. I start my argument by describing a foundational way of thinking about the ethical justification for regulatory limits on research risk; I then apply this way of thinking to HIV cure trials. In offering this analysis, I confine my attention to studies enrolling competent adults and I also do not consider risks research may pose to third parties or society. Rather, my concern is to engage with the thought that some trials are so risky that performing them is an ethically unacceptable way to treat the participants themselves. I reject this thought and instead argue that there is no level of risk, no matter how high, that inherently mistreats a participant. (shrink)

I argue for a conciliationist treatment of peer disagreement, on the grounds that the evidence that non-conciliatory theorists point to--the evidence that conciliatory-friendly independence principles would rule out--bears a troubling relation to accuracy. Namely, we can anticipate that trying to respond to it is a bad deal with respect to our expected accuracy. I consequently argue that we shouldn't try to respond to it. Instead we should ignore it, and be conciliationists.

Our objective is to understand how parents and children perceive their roles in decision making about research participation. Forty-five children (ages 4-15 years) with or without a chronic condition and 21 parents were the participants. A semistructured interview assessed perceptions of up to 4 hypothetical research scenarios with varying levels of risk, benefit, and complexity. Children were also administered the Peabody Picture Vocabulary Test, Third Edition, to assess verbal ability, as a proxy for the child's cognitive development. The audiotaped interviews (...) were transcribed and analyzed for themes related to parent and child decision-making roles. Both parents and children varied in their perceptions of decision-making roles. Child perceptions of parental influence on decision making as knowledge-based increased with cognitive development, whereas perceptions of parental influence as power-based decreased. Both children and parents commented that they would collaborate with each other when making decisions. Collaborative decision making appeared to increase with cognitive development. These findings suggest that approaches to child assent and parent permission should consider the parent-child relationship and how children and families typically make decisions. Future research is necessary to explain variation in the process of research decision making across children and families, explore the role of collaboration on children's decision-making skills, and understand developmental trajectories and mechanisms related to research decision making. (shrink)

Bioethics, Volume 36, Issue 7, Page 757-764, September 2022.

I argue against ‘right reason’ style accounts of how we should manage our beliefs in the face of higher-order evidence. I start from the observation that such views seem to have bad practical consequences when we imagine someone acting on them. I then catalogs ways that Williamson, Weatherson, and Lasonen-Aarnio have tried to block objections based on these consequences; I argue all fail. I then move on to offer my own theoretical picture of a rational ‘should believe,’ and show that, (...) if such a picture is right, it can neatly explain why right reason isn't. I close by arguing that the extent to which anti-luminosity arguments motivate right reason has been overstated; the positive picture developed here, despite rejecting right reason, is nonetheless consistent with luminosity failures. (shrink)

This article considers the ethics of photojournalism from a television news perspective. The author, on the basis of his participant?observation study conducted at two major?market television stations, suggests that while most of the television news photographers he observed and interviewed expressed strong ethical beliefs and values, those same individuals admitted they often acted in contradiction to many of their personal ethical beliefs. Their actions in carrying out their work and their revelations on the structure of their ethical beliefs indicate they (...) face a dilemma in balancing values. They must deal with the often contradictory values of competition, careerism, journalistic norms, peer pressure, technology, and management and organizational expectations. (shrink)

The psychological concept of illusion is defined as a process involving an interaction of logical and empirical considerations. Common usage suggests that an illusion is a discrepancy between one's awareness and some stimulus. Following preliminary definitions of classes of stimuli, five definitions of illusion are considered, based upon the possible discrepancies between awareness and a stimulus. It is found that each of these definitions fails to make important distinctions, even to the point of equating all illusory and perceptual phenomena. This (...) dilemma is resolved by redefining illusion without reference to truth or falsity, but relative to the functioning of a given perceptual system under different conditions. The definition accepted as best is 'a discrepancy between one's perceptions of an object or event observed under different conditions'. Conditions may differ in terms of stimulus exposure, stimulus context, or experiental context. The philosophical and psychological implications are discussed of accepting a definition of illusion not based on a discrepancy between awareness and a stimulus. (shrink)

Each contributor to this book has used personal experience as the basis from which to frame his individual sociological perspectives. Because they have personalized their work, their accounts are real, and recognizable as having come from 'real' persons, about 'real' experiences. There are no objectively-distanced disembodied third person entities in these accounts. These writers are actual people whose stories will make you laugh, cry, think, and want to know more.

Bioethicists broadly agree that there is a limit to the level of net risk that biomedical research may permissibly impose on participants, even in cases where the potential of that research to improve the health of the population health would be great. Although some may permissibly volunteer to take on some degree of pro‐social risk, no one, not even a willing volunteer, may ever be outright sacrificed for others. One might think this perspective, if correct, makes it effectively impossible to (...) study interventions with high intrinsic risks. But I describe a method – risk dilution – by which an extremely high‐risk intervention can nonetheless be effectively studied in the context of an acceptably low‐risk trial. I then defend risk dilution from objections. (shrink)

Individuals do not have a right to participate in clinical trials. But, they do have a right against being denied participation for inappropriate reasons. Despite the widespread endorsement of these two claims, there has been little discussion regarding which conditions for participation in clinical trials are appropriate and which are inappropriate. The present manuscript attempts to address this gap in the literature. We first describe and then argue against the claim that conditions on enrollment or continued participation are appropriate only (...) when they are needed to answer the scientific question(s) posed by the trial. We then offer an alternative view according to which the appropriateness of conditions depends on whether they help to satisfy the ethical requirements of clinical research. Because these requirements include social value, the present view implies that promoting social value is an acceptable reason to impose conditions on research participation. With this in mind, we explain why it is not coercive to require potential participants to accept conditions on enrollment that promote a trial's social value, even when the participants find those conditions unwelcome. We conclude by evaluating the present proposal's implications for the common practice of requiring participants to agree to the possible use of their leftover biospecimens in a broad range of future research. We argue, contra current regulatory policy, that this practice can be acceptable even when the present trial offers participants the prospect of clinical benefit and the samples are being reserved for future research that is unrelated to the present trial. (shrink)

Volume 20, Issue 2, February 2020, Page 30-32.

Short overview of the From Small Beginnings Project and its relevance for resisting eugenics in contemporary society.