As next‐generation genomic sequencing, including whole‐genome sequencing information, becomes more common in research, clinical, and public health contexts, there is a need for comprehensive communication strategies and education approaches to prepare patients and clinicians to manage this information and make informed decisions about its use, and nowhere is that imperative more pronounced than when genomic sequencing is applied to newborns. Unfortunately, in‐person counseling is unlikely to be applicable or cost‐effective when parents obtain genomic risk information directly via the Internet. As (...) a rule, communication strategies should match how people are accessing health information. Today, many people can obtain health information in a variety of settings, including through direct‐to‐consumer services, via websites, and through other digital channels or settings. In response to these changes, new communication strategies need to be considered. Adopting a comprehensive communication model means understanding the multiple levels of influence experienced by parents and the clinicians who serve them. In addition, applying communication‐science principles can help in addressing some key challenges to effectively communicating genomic information to parents. (shrink)

Unrecognized conventions—practices that are conventional even though their participants do not recognize them as such—play central roles in shaping our lives. They range from the indispensable (e.g. unrecognized linguistic conventions) to the insidious (e.g. some of our gender conventions). Unrecognized conventions pose a challenge for accounts of conventions because it is difficult to incorporate the distinctive arbitrariness of conventions—the fact that conventions always have alternatives—without accidentally excluding many unrecognized conventions. I develop an Accessibility Requirement that allows us to account for (...) both arbitrariness and unrecognized conventions. Specifically, I argue that a conventional practice must have at least one alternative that is at least approximately as good and at least approximately as accessible as the conventional practice itself, independent of the dominance the practice gained as it became conventional. In the course of arguing for this requirement, I also show that two prominent accounts of conventions, David Lewis’s and Ruth Garrett Millikan’s, run into problems with capturing the arbitrariness of conventions. The Accessibility Requirement opens the door to improved accounts of conventions by precisely identifying the way in which conventions are arbitrary. (shrink)

David Lewis’s account of conventions has received substantial criticism over the years, but one aspect of it has been less controversial and thus has been retained in various forms by other authors: his requirement that members of a group in which a convention obtains must know that they and others conform. I argue that knowledge of conformity requirements wrongly exclude certain paradigmatic conventions, including some central semantic conventions. Ruth Garrett Millikan’s account of conventions accommodates these cases, but it is (...) marred by her (as I argue) mistaken claim that most linguistic conventions involve coordination, and by complications with her central notion of reproduction. Aiming to build upon Millikan’s insights while avoiding her account’s problems, I contend that doing A is conventional in groups in which there is widespread, interconnected copying of doing A as a way of doing something further, B, where there are other equally good and accessible ways to do B. (shrink)

This essay examines how C. S. Lewis, in Till We Have Faces, illustrates the Christian’s journey of sanctification through the pre-Christian story of his main character, Orual. She must gain two ‘faces’ in this process that correspond to the two books she writes. First, she must gain the face of self-knowledge through humility. The key components to this face are her memory and the act of writing of her first book, which together create a mirror to reflect her sin (...) back to her. Second, Orual must gain the face of transformation through divine agape love. The humility she learned from her first face now allows her to enter what Lewis describes as the dance of self-giving, which is a crucial element to the second face of transformation in its mortification of Orual’s sin and selfishness. In the second face, Orual gains access to an ‘actual language’ that transcends merely verbal words and involves worshipping the god with her whole being, as do we in being transformed to reflect Christ more clearly. Orual’s writing is a form of this ‘actual language’, and her second book that shares her personal encounter with the god of the mountain reflects to others the beauty of the divine. Similarly, Christians should reflect Jesus with their lives and their art, which are inextricably intertwined because a life lived for Him is the highest form of artwork they can create. (shrink)

As members of the fetal surgery advisory board at a large tertiary care center, we read with great interest Hendriks’ et al. target article proposing a new ethical framework for fetal therap...

We were interested to read the current target article, given our admiration for the senior author’s comprehensive coverage of these same topics a decade ago (Donley, Hul...

This paper contends that eating shapes the self; that is, our practices and understandings of eating can cultivate, reinforce, or diminish important aspects of the self, including agency, values, capacities, affects, and self-understandings. I argue that these self-shaping effects should be included in our ethical analyses and evaluations of eating. I make a case for this claim through an analysis and critique of the hypothesis that young women’s vegetarianism is a risk, sign, or “cover” for eating disorders or disordered eating. (...) After outlining the relevant empirical literature, I suggest that the evidence for this hypothesis is inconclusive. Given this uncertainty, we should consider the risks of making a mistake when accepting or rejecting this understanding of young women’s eating. I argue that these risks importantly include negative effects on the self, such as damage to moral and epistemic agency. Along with other potential consequences of mistakenly accepting the hypothesis, these effects give us reason to reject it pending more conclusive research. Overall, this paper offers a philosophical intervention into the debate over the relationship between vegetarianism and eating disorders while illustrating the ethical importance and relevance of eating as a self-shaping activity. (shrink)

In an effort to address healthcare disparities in lesbian, gay, bisexual, transgender, and queer populations, many hospitals and clinics institute diversity training meant to increase providers’ awareness of and sensitivity to this patient population. Despite these efforts, many healthcare spaces remain inhospitable to LGBTQ patients and their loved ones. Even in the absence of overt forms of discrimination, LGBTQ patients report feeling anxious, unwelcome, ashamed, and distrustful in healthcare encounters. We argue that these negative experiences are produced by a variety (...) of subtle, ostensibly insignificant features of healthcare spaces and interpersonal interactions called microaggressions. Healthcare spaces and providers often convey heteronormative microaggressions, which communicate to LGBTQ—and, we suggest, intersex and asexual —people that their identities, experiences, and relationships are abnormal, pathological, unexpected, unwelcome, or shameful. We identify heteronormative microaggressions common to healthcare settings and specify how they negatively impact LGBTQIA patients. We argue that standard diversity training cannot sufficiently address heteronormative microaggressions. Despite these challenges, healthcare institutions and providers must take responsibility for heteronormative microaggressions and take steps to reduce their frequency and mitigate their effects on LGBTQIA care. We conclude by offering strategies for problem-solving at the level of medical education, institutional culture and policy, and individual awareness. (shrink)

This book brings together an international collection of experts in reproductive ethics, law, disability studies, and medicine to explore the challenging future of reproduction and children. From the medical to the social and from the financial to the legal, the authors explore the expanding impact of reproductive genetics on our society. New advances in genetic technologies are revolutionizing the practice of reproductive medicine. We have expanded our ability to detect genetic changes in embryos and fetuses in ways that potentially allow (...) to identify, treat, or prevent a growing range of diseases. The development of gene-editing technologies raises questions about the possibility of removing disease-causing variants from embryos before pregnancy implantation. The growing sophistication of prenatal genomic sequencing offers us glimpses into the whole genome of the developing fetus. And, the increasingly sophisticated science of 'gene matching' allows us greater and greater foreknowledge of how the genomes of two individuals will combine in a future child. This is an indispensable book on the newest developments in bioethics caused by the sciences. Chapter 5 is available open access under a Creative Commons Attribution 4.0 International License via link.springer.com. (shrink)

Given the prevalence of social media, a nascent but important area of research is the effect of social media posting on one’s own self. It is possible that an individual’s social media posts may have predictive capacity, especially in relation to health behavior. Researchers have long used concepts from the theory of reasoned action to predict health behaviors. The theory does not account for social media, which may influence or predict health behaviors. The purpose of this study was to test (...) a model including Facebook alcohol displays and constructs from the theory of reasoned action to predict binge drinking. Incoming college freshmen from two schools (312 participants between 18 and 19 years old) were interviewed prior to (T1) and 1 year into college (T2), and their Facebook profiles were evaluated for displayed alcohol content. Path modeling was used to evaluate direct and indirect paths predicting binge drinking. Path analysis suggested that Facebook alcohol displays at T1 directly predict binge drinking at T2, while alcohol attitude both directly and indirectly predicts binge drinking. Based on these results, a preliminary model of social media presentation and action is discussed. (shrink)

This paper offers a defense of the practice of mindless eating. Popular accounts of the practice suggest that it is non-autonomous and to blame for many of society’s food related problems, including the so-called obesity epidemic and the prevalence of diet related illnesses like diabetes. I use Maureen Sie’s “traffic participation” account of agency to argue that some mindless eating is autonomous, or more specifically, agential. Insofar as we value autonomous eating, then, it should be valued. I also argue that (...) mindless eating can be substantively good: it can help us achieve valuable ends, like creating and maintaining community. Acknowledging the agency and value in mindless eating has both practical and ethical benefits. I contend that it can help us preserve the value in mindless eating while suggesting more effective ways to change it, and, by offering a new narrative about mindless eaters, may be less damaging to agency than popular narratives. (shrink)

Although “you are what you eat” is a well-worn cliché, personal identity does not figure prominently in many debates about the ethics of eating interventions. This paper contributes to a growing philosophical literature theorizing the connection between eating and identity and exploring its implications for eating interventions. I explore how “identity-policing,” a key mechanism for the social constitution and maintenance of identity, applies to eating and trace its ethical implications for eating interventions. I argue that identity policing can be harmful (...) and that eating interventions can subject people to these harms by invoking identity policing qua intervention strategy or by encouraging people to eat in ways that subject them to policing from others. While these harms may be outweighed by the benefits of the intervention being promoted, they should nonetheless be acknowledged and accounted for. To aid in these evaluations, I consider factors that modulate the presence and severity of identity-policing and discuss strategies for developing less harmful eating interventions. I conclude by considering the relationship between identity-policing and identity loss caused by long-term diet change. This paper contributes to the centering of identity in food ethics and to a more comprehensive picture of identity’s ethical importance for eating interventions. (shrink)

In their target article, Conley et al. (2023) appropriately highlight the ongoing conceptual and practical opacity of public engagement (PE) in the translation of human gene editing (HGE) (Conley e...

It is a common practice for family members to bring food to hospitalized loved ones. However, in some cases, this food contravenes a patient's dietary plan. Such situations can create significant tension and distrust between health care professionals and families and may lead the former to doubt a family's willingness or ability to support patient recovery. This case‐study essay offers an ethical analysis of these situations. We draw on Hilde Lindemann's work to argue that providing food to family members is (...) an important way that families discharge their moral functions of caring for their members and holding them in their identities. When family members are hospitalized, other means of performing these functions are limited. Acknowledging the ethical importance of feeding family members alongside the medical need for dietary restrictions, we offer strategies for creative problem‐solving that center diet as a subject for shared decision‐making and regular, ongoing communication among health care professionals, patients, and families. (shrink)

I am a feminist bioethicist whose work focuses on the ethics of eating. Though COVID-19 is not a foodborne illness, it has had significant impacts on eating around the world, including increases in food insecurity, dining restrictions and closures of restaurants, interruptions in supply chains, and rising food prices. Many people have been eating at home more often—some alone, others with members of their households—and emotional or stress eating is on the rise.A feminist perspective is indispensable for understanding and responding (...) appropriately to these changes. The costs of these changes have not been distributed equally, and drawing attention to how disproportionate harm tracks gendered and intersectional... (shrink)

Having a confirmation bias sometimes leads us to hold inaccurate beliefs. So, the puzzle goes: why do we have it? According to the influential argumentative theory of reasoning, confirmation bias emerges because the primary function of reason is not to form accurate beliefs, but to convince others that we’re right. A crucial prediction of the theory, then, is that confirmation bias should be found only in the reasoning domain. In this article, we argue that there is evidence that confirmation bias (...) does exist outside the reasoning domain. This undermines the main evidential basis for the argumentative theory of reasoning. In presenting the relevant evidence, we explore why having such confirmation bias may not be maladaptive. (shrink)

Drawing on the relation between disciplinary power and aesthetics, Honi Fern Haber argues that the muscled woman’s “revolting” body undermines patriarchy and empowers women. Consequently, female bodybuilding can be a Foucauldian and feminist practice of resistance. I will argue that Haber’s insistence on the visibility of embodied resistance is flawed. By positing a static goal and failing to sufficiently consider non-visible aspects of normalization, namely pleasure and pain, Haber risks reinscribing the muscled woman into yet another normalizing scheme. In the (...) light of recent work on Foucault's ethics and embodied resistance, I suggest that weight lifting may be more successfully recommended as a practice of resistance when undertaken to increase capacities and for the pleasure of the activity itself. (shrink)

While the 2022 Supreme Court of the United States decision in Dobbs v Jackson Women’s Health Organization may bring the contingent rights of pregnant people to refuse interventions into sharper foc...

We are grateful to Friesen and colleagues for drawing attention to the tension between the protection of populations that may experience vulnerability with their inclusion in research (Friesen et a...

Philosophers analyze the last of the great rock stars.

Creating android and humanoid robots to furnish companionship in the nursing care of older people continues to attract substantial development capital and research. Some people object, though, that machines of this kind furnish human–robot interaction characterized by inauthentic relationships. In particular, robotic and artificial intelligence (AI) technologies have been charged with substituting mindless mimicry of human behaviour for the real presence of conscious caring offered by human nurses. When thus viewed as deceptive, the robots also have prompted corresponding concerns regarding (...) their potential psychological, moral, and spiritual implications for people who will be interacting socially with these machines. The foregoing objections and concerns can be assessed quite differently, depending upon ambient religious beliefs or metaphysical presuppositions. The complaints may be set aside as unnecessary, for example, within religious traditions for which even current robots can be viewed as presenting spiritual aspects. Elsewhere, technological cultures may reject the complaints as expression of outdated superstition, holding that the machines eventually will enjoy a consciousness described entirely in materialist and behaviourist terms. While recognizing such assessments, the authors of this essay propose that the heart of the foregoing objections and concerns may be evaluated, in part, scientifically – albeit with a conclusion recommending fundamental revisions in AI modelling of human mental life. Specifically, considerations now favour introduction of AI models using interactive classical and quantum computation. Without this change, the answer to the essay's title question arguably is ‘no’ – with it, the answer plausibly becomes ‘maybe’. Either outcome holds very interesting implications for nurses. (shrink)

As philosophers, we may be accustomed to asking ourselves—or at least having to explain to others—why we do philosophy. In Categories We Live By: The Construction of Sex, Gender, Race, and Other So...

Which systems/organisms are conscious? New tests for consciousness (‘C-tests’) are urgently needed. There is persisting uncertainty about when consciousness arises in human development, when it is lost due to neurological disorders and brain injury, and how it is distributed in nonhuman species. This need is amplified by recent and rapid developments in artificial intelligence (AI), neural organoids, and xenobot technology. Although a number of C-tests have been proposed in recent years, most are of limited use, and currently we have no (...) C-tests for many of the populations for which they are most critical. Here, we identify challenges facing any attempt to develop C-tests, propose a multidimensional classification of such tests, and identify strategies that might be used to validate them. (shrink)

Alongside concerns for animal welfare, concerns for land, water, and climate are undermining established food identities in many parts of the world. In Aotearoa New Zealand, agrifood relations are bound tightly into national identities and the materialities of export dependence on dairying and agriculture more widely. Dairy/ing identities have been central to national development projects and the politics that underpin them for much of New Zealand’s history. They are central to an intransigent agrifood political ontology. For the last decade, however, (...) they have been challenged by the identity politics of ethical food consumption. This paper explores the ensuing contests and asks how they are reshaping agrifood identities. We draw on interviews with 15 participants in Aotearoa New Zealand who have made dietary transitions that reduce or exclude dairy products. Our aim is not to identify a new post-dairying identity or claim a reconfigured national identity, but to examine the collision of production-consumption values in the context of a dominant place-based food identity. We ask how participants navigate contradictory commitments to becoming ‘good environmental citizens’ whilst remaining ‘good national citizens’. The paper offers insights for examining similar struggles elsewhere and the potential to shift agrifood relations and undermine entrenched political ontologies through ethical food consumption values. (shrink)

The scientific study of consciousness emerged as an organized field of research only a few decades ago. As empirical results have begun to enhance our understanding of consciousness, it is important to find out whether other factors, such as funding for consciousness research and status of consciousness scientists, provide a suitable environment for the field to grow and develop sustainably. We conducted an online survey on people’s views regarding various aspects of the scientific study of consciousness as a field of (...) research. 249 participants completed the survey, among which 80% were in academia, and around 40% were experts in consciousness research. Topics covered include the progress made by the field, funding for consciousness research, job opportunities for consciousness researchers, and the scientific rigor of the work done by researchers in the field. The majority of respondents (78%) indicated that scientific research on consciousness has been making progress. However, most participants perceived obtaining funding and getting a job in the field of consciousness research as more difficult than in other subfields of neuroscience. Overall, work done in consciousness research was perceived to be less rigorous than other neuroscience subfields, but this perceived lack of rigor was not related to the perceived difficulty in finding jobs and obtaining funding. Lastly, we found that, overall, the global workspace theory was perceived to be the most promising (around 28%), while most non-expert researchers (around 22% of non-experts) found the integrated information theory (IIT) most promising. We believe the survey results provide an interesting picture of current opinions from scientists and researchers about the progresses made and the challenges faced by consciousness research as an independent field. They will inspire collective reflection on the future directions regarding funding and job opportunities for the field. (shrink)

This volume considers the many areas where medicine intersects with the law. Advances in medical research, reproductive science and genetics have given rise to unprecedented ethical and legal quandaries. These are reflected in chapters on cloning, organ donation, choosing genetic characteristics, and the use of Viagra.

Objective We reviewed human–robot interaction (HRI) participatory design (PD) research with older adults. The goal was to identify methods used, determine their value for design of robots with older adults, and provide guidance for best practices. Background Assistive robots may promote aging-in-place and quality of life for older adults. However, the robots must be designed to meet older adults’ specific needs and preferences. PD and other user-centered methods may be used to engage older adults in the robot development process to (...) accommodate their needs and preferences and to assure usability of emergent assistive robots. Method This targeted review of HRI PD studies with older adults draws on a detailed review of 26 articles. Our assessment focused on the HRI methods and their utility for use with older adults who have a range of needs and capabilities. Results Our review highlighted the importance of using mixed methods and including multiple stakeholders throughout the design process. These approaches can encourage mutual learning (to improve design by developers and to increase acceptance by users). We identified key phases used in HRI PD workshops (e.g., initial interview phase, series of focus groups phase, and presentation phase). These approaches can provide inspiration for future efforts. Conclusion HRI PD strategies can support designers in developing assistive robots that meet older adults’ needs, capabilities, and preferences to promote acceptance. More HRI research is needed to understand potential implications for aging-in-place. PD methods provide a promising approach. (shrink)

The emergence of the “4th Industrial Revolution,” i.e. the convergence of artificial intelligence, the Internet of Things, advanced materials, and bioengineering technologies, could accelerate socioeconomic insecurities and anxieties or provide beneficial alternatives to the status quo. In the post-Covid-19 era, the entities that are best positioned to capitalize on these innovations are large firms, which use digital platforms and big data to orchestrate vast ecosystems of users and extract market share across industry sectors. Nonetheless, these technologies also have the potential (...) to democratize ownership, broaden political-economic participation, and reduce environmental harms. We articulate the potential sociotechnical pathways in this high-stakes crossroads by analyzing cellular agriculture, an exemplary 4th Industrial Revolution technology that synergizes computer science, biopharma, tissue engineering, and food science to grow cultured meat, dairy, and egg products from cultured cells and/or genetically modified yeast. Our exploration of this space involved multi-sited ethnographic research in both the cellular agriculture community and alternative economic organizations devoted to open source licensing, member-owned cooperatives, social financing, and platform business models. Upon discussing how these latter approaches could potentially facilitate alternative sociotechnical pathways in cellular agriculture, we reflect upon the broader implications of this work with respect to the 4th Industrial Revolution and the enduring need for public policy reform. (shrink)

Purpose: The purpose of this mixed-methods study was to determine whether Facebook use affects biological response to stress and to characterize participants’ use of Facebook during a stressful event. Methods: College students completed a modified Trier Social Stress Test including video recording. Participants were randomly assigned to the Facebook group or control group (no preparatory materials). Pulse and salivary cortisol were measured and compared using t tests. Trained coders assessed videos for 13 common Facebook actions and categorized them as purposeful (...) (tool based) or nonpurposeful (distraction); pulse was compared between groups using Fisher’s exact test. Results: Of 41 participants, 14 (36%) were male and 36 (88%) were Caucasian, mean age was 19.6 ± 1.4 years; 19 participants were randomized to the Facebook group. Comparing Time 1 and Time 3, there were no significant differences in cortisol or pulse change between the Facebook group and the control group. However, males in the control group had a mean pulse reduction of −3.5 ± 0.2 bpm between baseline and Time 3; males in the Facebook group had a mean pulse increase of 10 ± 8.6 bmp (p =.01). Overall, 58.8% of videos were categorized as primarily tool based. Participants who primarily demonstrated distracted use of Facebook had higher than average pulse rates at Time 3 (mean 85.1 vs. 73.6 bpm, p =.03). Discussion: Male Facebook users and participants who demonstrated distracted Facebook use showed increased biologic signs of stress during a stressful event. Some college students may find Facebook use detrimental to performance in stressful situations, but this may vary by gender and type of use. (shrink)

While the Philosophy for Children method has been adopted within classrooms by individual teachers and into some school systems by schoolboards, public and school libraries, the ideal users of this sort of programming, have been slow to recognise the benefits of this didactic methodology. This is particularly surprising given that the P4C method integrates perfectly with traditional story-time orientated programming. Not only is the integration of P4C into story-time sessions virtually seamless, but it might also help reinvigorate a well-established feature (...) of library programming with an aim to develop 21st-century information literacy competencies. This paper examines the case for the P4C method, explains the process of integration of the P4C method with traditional story-time, and highlights the potential benefits of incorporating Philosophy for Children in public and school library programming. (shrink)

In this study we use dual process theory of self-regulation to develop a framework that outlines the mediating and moderating mechanisms explaining the relationship between leader emotional exhaustion and leadership style (transformational leadership and abusive supervision). Using Glomb et al.’s (2011) framework, we identify empathy and negative emotion as mediators that are of particular importance for leaders. In addition, we propose that leader mindfulness moderates these processes to improve leadership style. Using a time-lagged survey of leaders (N = 505) we (...) found that leader empathy and negative emotion mediated the relationships between emotional exhaustion and leadership style. Furthermore, we found that leader mindfulness significantly moderated the indirect effect of leader emotional exhaustion on leadership style through negative emotion. However, leader mindfulness did not moderate the relationship between emotional exhaustion and empathy. Theoretical and practical implications are discussed. (shrink)

Bioethicists in healthcare institutions have the skills and insights and can and must facilitate and promote measures that address deeply ingrained structural issues that exacerbate health inequity...

Objectives: The objective of this post hoc exploratory analysis was to examine the relationship between age and measures of cortical excitability and inhibition. Methods: Forty-six participants (24 with major depressive disorder and 22 healthy controls) completed MT, SICI, ICF, and CSP testing in a cross-sectional protocol. Of these 46 participants, 33 completed LICI testing. Multiple linear robust regression and Spearman partial correlation coefficient were used to examine the relationship between age and the TMS measures. Results: In the overall sample of (...) 46 participants, age had a significant negative relationship with motor threshold in both the right (rs = -0.49, adjusted p =.007; β= -0.08, adjusted p=.001) and left (rs = -0.42, adjusted p =.029; β= -0.05, adjusted p=.004) hemispheres. This significant negative relationship of age with motor threshold was also observed in the sample of depressed youth in both the right (rs = -0.70, adjusted p =.002; β= -0.09, adjusted p=.001) and left (rs = -0.54, adjusted p =.034; β= -0.05, adjusted p=.017) hemispheres, but not in healthy controls. In the sample of the 33 participants who completed LICI testing, age had a significant negative relationship with LICI (200 millisecond interval) in both the right (rs = -0.48, adjusted p =.05; β= -0.24, adjusted p=.007) and left (rs = -0.64, adjusted p =.002; β= -0.23, adjusted p=.001) hemispheres. This negative relationship between age and LICI (200 millisecond interval) was also observed in depressed youth in both the right (rs = -0.76, adjusted p =.034; β= -0.35, adjusted p=.004) and left (rs = -0.92, adjusted p =.002; β= -0.25, adjusted p=.001) hemispheres. Conclusion: These findings suggest that younger children have higher motor thresholds. This is more pronounced in depressed youth than healthy controls. LICI inhibition may also increase with age in youth. (shrink)

BackgroundThe proper and ethical inclusion of PWLHIV and their young children in research is paramount to ensure valid evidence is generated to optimize treatment and care. Little empirical data exists to inform ethical considerations deemed most critical to these populations. Our study aimed to systematically review the empiric literature regarding ethical considerations for research participation of PWLHIV and their young children.MethodsWe conducted this systematic review in partnership with a medical librarian. A search strategy was designed and performed within the following (...) electronic databases: Ovid MEDLINE, Embase and CINAHL. We screened titles and abstracts using the following inclusion criteria: (1) a study population of PWLHIV or children under 5 years of age; and (2) collection of qualitative or quantitative data regarding ethics of research participation. Excluded were reviews, commentaries, policy statements, clinical care-related ethics concerns, abstracts, case studies, or studies unrelated to HIV research. Studies were appraised for quality, data were extracted, and studies were qualitatively analyzed using a principle-based ethical framework within the Belmont Report.ResultsOf the 7470 titles identified, 538 full-text articles were reviewed for eligibility and only three articles met full criteria for inclusion within this review. While we allowed for inclusion of studies involving young children born to mothers with HIV, only articles focused on PWLHIV were identified. Within the results of these studies, four themes emerged: (1) adequacy of informed consent; (2) consideration of paternal involvement; (3) balancing risks; and (4) access to research and treatment. A strength of this review is that it included perspectives of international research investigators, community leaders, and male partners. However, only two studies collected empiric data from PWLHIV regarding their experiences participating in researchConclusionResearchers and funding agencies should be aware of these considerations and appreciate the value of and critical need for formative research to ensure clinical trials involving PWLHIV promote ethical, well-informed research participation and, ultimately, improve care outcomes. More research is needed to create a comprehensive ethical framework for researchers when conducting studies with PWLHIV. (shrink)