BACKGROUND:Cancer care partners (also known as caregivers or caretakers) are individuals without formal training or experience in cancer care who provide health or social support to others with cancer. Care partners are oftentimes family or friends of people with cancer. While the experiences of cancer care partners are well documented, little is known about the moral challenges they face. The purpose of this analysis was to explore the moral landscape of cancer care partners' experiences across disease and treatment trajectories. METHODS:We used the HEXI methodology and dimensional analysis to conduct an analysis of qualitative data from individual interviews with 22 cancer care partners. Interviews were audio-recorded, transcribed verbatim, and aligned before being analyzed for the purpose of this analysis. RESULTS:Our analysis resulted in a situation specific theory of how cancer care partners navigate the range of moral challenges they experience. Through the conceptual perspective of The Role, cancer care partners navigate moral challenges through collaborating in care with healthcare teams, other care partners, other support persons, or the people they are caring for. Prior to seeking collaborative care in these ways, a cancer care partner must have a sense of perceived collaboration efficacy. If collaborating in care is successful, cancer care partners can achieve moral resolution regarding the moral challenges initially faced. However, if collaborating in care is unsuccessful, the cancer care partner remains stuck in a morally challenging situation. CONCLUSIONS:Future inquiry should empirically extend and refine this situation specific theory in heterogeneous populations. Practice and policy efforts can help improve care for cancer care partners, including direct communication and moral care partner-inclusive supportive care.
BACKGROUND:In Canada, prenatal cell-free DNA screening is mainly used as a second-tier screening test that targets specific aneuploidies, namely trisomy 21, 18 and 13. METHODS:Within the PEGASUS-2 study, we conducted in-depth interviews with 11 individuals living with a genetic condition currently or potentially detectable by this screening method, to explore their opinions regarding its potential implementation as a first-tier test, and the expansion of its scope. RESULTS:Qualitative analysis revealed that, although some individuals appreciated an early result with the test, they generally considered prenatal screening to be a predetermined route to termination of pregnancy. Participants felt that this social expectation reflects negative attitudes toward people who are genetically different. They feared that a more accessible and expanded test would accentuate the slippery slope toward eugenic tendencies in society. Thus, broadening its scope could be beneficial only in the case of conditions deemed severe on the basis of viability and quality of life criteria. While parents of children living with Down syndrome were reluctant to support screening, based on their challenging but rewarding experiences, people living with sex chromosome anomalies (SCAs) were supportive of its use to detect SCAs, to enable better prenatal preparation. All felt that screening should be accompanied by better, balanced, and more transparent information, to ensure it is a tool that promotes reproductive autonomy. Additional findings include a recurring comparison between Down syndrome and autism spectrum disorder regarding the future provision of prenatal screening, the use of "battle" metaphors to describe the prenatal journey, and reflections on the role of adoption as an alternative to termination. CONCLUSION:These perspectives, informed by lived experiences, should inform recommendations on the implementation of prenatal screening in Canada.
BACKGROUND:Global health researchers are celebrating notable success in their efforts to develop preventive vaccines to curb the human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) pandemic. HIV vaccine trial participants play a vital role, devoting their time, effort, and bodies to HIV prevention success. However, the conclusion of vaccine trials often shifts the spotlight from trial participants to the broader implications of the trial results, which may leave participants feeling neglected or abandoned. Little is documented regarding participants' psychological wellbeing after HIV vaccine trials end. AIM:This study aimed to explore psychological harms experienced by former trial participants after participation in HIV vaccine trials in Tanzania. METHODOLOGY:This qualitative study is part of a larger sequential exploratory mixed-methods design that aimed to explore the nonphysical risks and benefits of HIV vaccine trial participation and their effects on peoples' willingness to participate in similar trials. A snowball technique was used to sample 25 former trial participants and 11 researchers who conducted HIV vaccine trials from 2007 to 2015 in Tanzania. In-depth interviews were conducted followed by thematic qualitative analysis. RESULTS:The findings of this study reveal that former trial participants experienced psychological harms, categorized by three distinct themes: (1) psychological uncertainties, (2) dependance on the trials and (3) unmet emotional needs. Both trial researchers and former trial participants concurred on the first two themes. But the third theme-unmet emotional needs-was deeply personal to individual participants and hence reported by only the former trial participants. CONCLUSION:The psychological uncertainties experienced by former trial participants were expected to be prevented by the extensive education and information provided during the trials. Dependance to the trial could indicate the need for continuation of incentives such as free medical care and it is not uncommon in most low- and middle-income settings. Researchers in collaboration with Institutional Review Boards/Research Ethics Committees (IRBs/RECs) and community research stakeholders should agree on balanced incentives for specific vaccine trials that will not instill unrealistic expectations. Continuous participant engagement could provide an opportunity for trial results dissemination and correcting misconceptions as well as addressing the emotional needs of former trial participants. Future research should assess the extent of post-trial uncertainties and their effect on participants' mental health, which may affect their attitudes toward participation in similar future trials and their trust in research.
BACKGROUND:Accepted ethical principles in pediatrics hold that parents' reasons should not matter to determining ethical boundaries: it is the decision's effect on the child that matters. However, there is ongoing discussion surrounding what ethical weight, if any, should be granted to parents' reasons in decisions for their children and, to our knowledge, no empirical research focused on these questions. Refusal in pediatric oncology represents a particularly useful case in which to test these ethical principles. Understanding the influence of parents' reasons on treatment disagreements is important to assessing alignment between ethical guidance and clinical practice, determining whether intervention principles in pediatric ethics require revision, and mitigating implicit bias in clinicians' and ethicists' ethical judgments. METHODS:This was an exploratory, pilot qualitative study. Data was collected through semi-structured interviews with pediatric oncologists (n = 9) and clinical ethics consultants (n = 9), organized around two hypothetical cases of treatment refusal in pediatric oncology. Transcripts were coded in MAXQDA and analyzed using inductive content analysis. RESULTS:Participants agreed that it was important to engage with parents' reasons in the context of decisions for the child. Three main themes emerged from the interviews: 1) parents' reasons are not ethically relevant to assessments of harm, determinations of medical neglect or abuse, and decisions to seek state intervention; 2) parents' reasons matter in other ways, including being instrumentally or intrinsically valuable; and 3) religious and mistrust-based reasons evoke different responses. CONCLUSIONS:Our findings suggest there is, in principle, a strong commitment among pediatric oncologists and ethicists to conventional ethical guidance, especially the harm principle. Participants emphasized the instrumental value of engaging with parents' reasons, including how exploring parents' reasons can facilitate practical strategies for resolving disagreements. Our findings also suggest there may be some role-based differences in participants' views about the value of engaging with parents' reasons.
BACKGROUND:In Canada, individuals are eligible for medical assistance in dying (MAID) even if they would prefer, but lack access to, standard treatments or resources that would alleviate their suffering. The government does not publicly track such cases, and media reports play a critical role in identifying them. We aimed to analyze media reports to characterize the demographic, medical, and social circumstances of individuals seeking MAID because of difficulty accessing basic resources. METHODS:We searched Nexis and Eureka media databases to locate Canadian news articles (English and French) published between 1/2015 to 1/2025 about individuals who considered, requested, or received MAID and were motivated by a lack of access to resources. We analyzed articles by qualitative content analysis. RESULTS:We identified 37 unique individuals motivated by lack of resources to seek MAID. 15 individuals received, 15 requested, and 7 considered MAID. Thirty-two individuals' cases were reported on between 2021 and 2024. Individuals reported various disabilities and debilitating medical conditions. Resources that individuals reported lacking fell into two categories, healthcare and social services, and included sufficient disability benefits, adequate home care, and timely medical care. Some individuals specifically stated that if they received the necessary resources, they would not be seeking MAID. CONCLUSIONS:That there were 37 unique individuals who sought MAID because of difficulty accessing publicly funded health and social services resources suggests these cases are not rare. Our results emphasize the need to integrate explicit justice considerations into MAID debates, consider the relative priority of MAID among other services, and conduct more systematic monitoring of these cases.
BACKGROUND:Student-run clinics (SRCs) are a unique medical education and healthcare delivery model. On one hand, SRCs have the potential to bridge important care gaps and train future practitioners to address complex health disparities. On the other, allowing students to administratively "run" a clinic for the indigent, with varying levels of oversight, raises ethical questions. This review attempts to identify and synthesize the major ethical concerns scholars have raised about SRCs. METHODS:We searched PubMed, Embase, Ovid Medline, Web of Science, and SCOPUS, reviewed all publications in the non-indexed Journal of Student Run Clinic and The Free Clinic Research Collective, and iteratively snowball sampled the bibliographies and Google Scholar "cited by" results of included publications until saturation. We performed thematic analysis of included publications. RESULTS:Of 7,584 initial results, we identified 503 publications on SRCs and 22 relevant to this review. In total, 4.3% (22/503) of the SRC literature focuses on ethical concerns, which we inductively categorize as: 1) Structural and systemic problems, 2) Lack of consistent administrative and clinical oversight, 3) Substandard quality-of-care, 4) Undue influence on patients, 5) Negative impact on trainees, and 6) Inadequate involvement of the community. DISCUSSION:SRCs are a growing part of the U.S. healthcare safety net system. They are also an important nexus of ethical questions that impact patient care and trainee education. Many identified concerns relate to administrative, structural, and sociological issues which may be outside the direct training (and potentially awareness) of most medical students. Some work cautions that SRCs have potential to produce results discordant with their core aims, such as racial equity, health equity, and training service-oriented healthcare professionals. Increased awareness of these potential pitfalls offers new avenues for bioethical investigation and practical opportunities to support students and faculty in positioning these unique clinics for success.
BACKGROUND:Little is understood on how intersectionality and social background of patients and families influence ethical and clinical decision-making, particularly in the critical care setting. This study aims to explore how family identity and socioeconomic features influence the perceived medical appropriateness and ethical permissibility of treatment options for NICU patients when controlling for patient diagnosis and prognosis. METHODS:We conducted focus groups (n = 7) with interdisciplinary Neonatal Intensive Care Unit (NICU) health care professionals (N = 33) at a single Level IV NICU over an 8-month period. Participants reviewed and discussed a hypothetical case of a neonate with severe neurological impairment. Focus groups received the same medical information regarding the patient and prognosis but were provided 1 of 2 social scenarios where the family's contextual information (parental education, first language, religion, medical literacy, access to care, family structure, and parental presence at the bedside) were intentionally varied. Comparative thematic analysis was performed. RESULTS:Critical differences were identified in the way participants: (1) responded to parental requests for continued intervention and (2) incorporated the family's education, income, geography, medical literacy, and active presence on the unit in their medical recommendations. Specifically, we found that teams were more open to the idea of accommodating parental requests in the context of increased family resources, than they were in the context of lower family resources. CONCLUSION:Interpretation of family social context by NICU care teams can produce disparities in which interventions are offered, and which parental preferences are accommodated, underscoring the impact of family and social characteristics on clinical care.
BACKGROUND:Making clinical ethics consultation (CEC) services available to patients and their family members is a best practice most hospitals in the United States claim to follow. However, patients and families often lack awareness of CEC and rarely request CEC services. One reason patients and families might underutilize CEC is they lack access to important information about hospitals' CEC services. METHODS:Since patients and families often use hospital websites to find information about services, we applied a standardized search protocol to characterize information about CEC services hospitals have published on their own websites or websites of their academic affiliates. Our sample included the top 100 general, adult hospitals in the US identified by Newsweek and Statista in their 2024 ranking of hospitals around the world. RESULTS:We found 88 hospitals (88%) had information on their websites indicating availability of CEC services, with 79 (79%) indicating patients and families may request those services. Hospitals with websites indicating availability of CEC services often provided information about how to request CEC (77.3%), how CEC might benefit requesters (69.3%), and a specific phone number for making requests (58%). Other types of potentially important information appeared less often on the hospitals' websites, such as the names of people who provide CEC (27.3%), an email address for requesting CEC (20.5%), and whether and how the hospital charges for CEC (19.3%). CONCLUSIONS:This study reveals both needed improvements and potential models of best practice related to providing information about CEC services for patients and families on the websites of leading hospitals in the United States. US hospitals have an opportunity to promote accessibility of CEC by improving the quality of information about CEC services on their websites.
BACKGROUND:Automated approaches to cognitive impairment screening may soon achieve sufficient levels of accuracy for clinical implementation but they present potentially serious ethical challenges. Overcoming such challenges for successful implementation of automated screening may depend on the perspective of the clinicians who are its intended users. METHODS:We conducted a qualitative study of internal medicine, geriatrics and family medicine physicians recruited from ambulatory practices in New York City, NY to identify ethical challenges of implementing automated CI screening (n = 22). In four focus groups, we explored attitudes and beliefs about routine manual screening for cognitive impairment and automated screening based in machine learning models of data from electronic medical records (EMR) or patient audio recordings, using hypothetical scenarios. Focus group recordings were transcribed and analyzed using grounded theory. RESULTS:Participants reported routine screening for cognitive impairment only in the context of the Medicare annual wellness visit and generally avoided routine screening because of limited treatment options to support patients, such as poor access to geriatrics/neuropsychiatric services. Thematic analysis revealed several perceived benefits: enhanced clinical efficiency, engagement in cognitive healthcare of their patients, and expanded access to cognitive care. They identified several potential challenges with ethics implications: concerns about accuracy of the technology, bias, difficulty communicating the technology and results to patients and caregivers that could impact their ability to provide informed consent, and risks to patients (privacy, stigmatization and insurability). They noted that without more health system infrastructure to support patients with dementia, the benefits of automated screening would be limited. CONCLUSIONS:Physicians identified several critical ethical challenges to automated CI screening. Health systems will need to address these challenges to ensure benefit for and the safety, autonomy and privacy of patients and ultimately, the successful implementation of such technology.
BACKGROUND:Increasingly, researchers are leveraging social science survey data and genomic samples from millions of biobank participants to develop polygenic indices (PGIs) for social and behavioral traits. METHODS:This article utilizes horizon scanning methodology to track academic and lay literature regarding PGIs. RESULTS:We identified and coded 441 academic and 123 lay literature items, tracking the traits, sources of genetic and health data, and how each item discussed the harms, benefits, and limitations of sociogenomic PGIs. CONCLUSION:This in-depth review highlights variation in the portrayal of PGI research across academic and lay literature. Beyond simply elucidating what is being studied, and in which populations, this research shows how results are communicated, which messages are shown to academic and/or public audiences, and potential disconnects between how sociogenomic researchers and the lay literature describe the values and implications of the research.
Background. Prodromal Alzheimer's disease (AD) clinical trials enroll patients with mild cognitive impairment (MCI) and their study partners. This study examined trial enrollment decision-making and risk for misunderstanding trial information presented in an informed consent process for prodromal AD trials. Methods. We performed structured interviews with patients with MCI and individuals who could serve as their study partners. We presented details of a hypothetical prodromal AD trial, followed by questionnaires to assess involvement of the study partner in trial decisions, patient capacity to consent, and patient health numeracy skills. Results. Among 65 patient participants, most were male (66%) and non-Hispanic White (88%) with a mean (standard deviation) age of 74.9 (8.4) years. Among 57 study partners, most were spouses (83%), female (74%), and non-Hispanic White (91%) with a mean (standard deviation) age of 70.3 (13.6). Most patient participants (66%) and study partners (72%) reported they would make enrollment decisions in partnership; 28% of patient participants said they would make the decision themselves, with input from a study partner. Twenty-five patient participants (38%) lacked capacity to consent to the trial; 38% demonstrated impaired health numeracy. Seventeen patient participants (26%) demonstrated both a lack of capacity and impaired health numeracy, among whom seven reported they would make enrollment decisions on their own, with input from a study partner. Conclusions. Some patients with MCI demonstrated a lack of capacity to consent, impaired health numeracy, or both, putting them at risk for misunderstanding trial information in the consent process for a prodromal AD clinical trial.
BACKGROUND:Participation in a therapeutic clinical trial can be a challenging decision for patients with cancer and their family caregivers. Despite the implications of clinical trials for caregivers, there is little empirical research about how caregivers participate in clinical trial decision-making. This qualitative study sought to identify how caregivers view their role in these decisions and the attitudes and experiences of clinical trial staff regarding inclusion of caregivers in the informed consent process. METHODS:We performed four focus groups-two with clinical trial staff and two with caregivers of patients offered a cancer clinical trial-followed by 15 semi-structured interviews with caregivers. Focus group results informed interview guide development. Transcripts were analyzed using an abductive approach to content analysis, incorporating the theory of relational autonomy. RESULTS:Caregivers viewed their role as enhancing patient autonomy by helping to interpret clinical trial information and acting as a sounding board. They expressed ambivalence regarding the appropriate degree of influence caregivers should have in the final decision and were cautious not to overly sway patients. Clinical trial staff viewed caregivers as highly influential in decision-making and vital to supporting patient adherence to the study protocol. Caregiver relationships with the oncologist and research staff were influential in their perception of the benefits of the clinical trial and comfort with their loved one participating. CONCLUSIONS:Caregivers' key role in facilitating clinical trial decision-making and protocol adherence merits further attention from bioethicists and researchers. Uncertainty regarding their appropriate decisional role highlights the need for assessment of shared decision-making (SDM) preferences to include caregivers in addition to the traditional patient-physician dyad. Future research should develop and test SDM tools incorporating relational autonomy to identify appropriate decisional roles based on patient-caregiver relationship dynamics and values.
BACKGROUND:A number of patient organizations have recently embraced venture philanthropy, a model of patient advocacy that purports to use practices from venture capitalism in pursuit of philanthropic goals. However, a clear understanding of what venture philanthropy entails and what these organizations do remains elusive, hindering efforts to assess ethical implications of the model's growth. METHODS:We conducted a qualitative content analysis of self-reported profiles of 130 organizations in an affinity network promoting principles of venture philanthropy. We analyzed organizations' research goals, funding strategies, activities, and patient engagement efforts. RESULTS:Despite finding substantial variation in age, revenue, and disease focus, we identified shared assumptions and approaches that represent defining characteristics of venture philanthropy. First, organizations consistently present facilitating the development of new therapies as the most urgent need for patients. Second, organizations participate in financing and managing research across the development pipeline, rather than focusing on basic research as many patient organizations historically have done. Third, organizations seek to position themselves within established research and drug development networks, fostering collaborative relationships with key stakeholders, including pharmaceutical companies. We also find that some of the most transformative practices associated with venture philanthropy, such as direct investment in for-profit companies, remain relatively uncommon. CONCLUSIONS:Venture philanthropy represents an evolution in the ambitions and activities of patient organizations, with organizations becoming more fully enmeshed in the drug development process. Our findings raise ethical questions about how patient organizations conceptualize and advance patient interests and about tradeoffs inherent to the venture philanthropy model.
INTRODUCTION:The 2022 Russian invasion of Ukraine prompted diverse responses from global corporations. This study investigates the perspectives and actions of leading pharmaceutical companies amidst this geopolitical crisis, focusing on their public response to Russia's invasion. METHODS:Three rankings were used to identify top global pharmaceutical companies by revenue in 2022. Public statements, collected from public-facing company websites and archival websites, were analyzed via thematic content analysis to understand the responses of individual companies. RESULTS:Five key themes emerged: (1) Solidarity: expressions of support for Ukraine and condemnation of Russia; (2) Scaling-back: suspension of non-essential operations, including new clinical trials and investments; (3) Essential Medicines: commitment to maintaining the supply of life-saving medications; (4) Sanction Compliance: adherence to international sanctions; and (5) Donations: increased humanitarian aid. A majority of companies affirmed a commitment to the continued sales of essential medicines while simultaneously scaling back non-essential activities in the Russian market. Less than half of companies explicitly condemned Russia. Humanitarian donations were frequently mentioned. CONCLUSION:Pharmaceutical companies adopted a nuanced approach, balancing ethical obligations to provide essential medicines with responses to the conflict. The findings highlight the complex decision-making processes faced by multinational corporations during international conflicts, revealing a strategic response that prioritizes humanitarian needs and regulatory compliance alongside business continuity.
BACKGROUND:Classic psychedelics, such as psilocybin and LSD, evoke certain kinds of altered states of consciousness. Specific features of the experience, such as its allegedly ineffable nature, have been discussed as posing challenges to the informed consent process. A growing call for tailored informed consent documents (ICDs) in the psychedelic bioethics literature raises the question of how closely ICDs used in contemporary psychedelic trials reflect the concrete suggestions and proposals offered by psychedelic bioethicists. METHODS:In this article, we review ICDs from psilocybin clinical trials in the United States. Using a content analysis approach, we provide a systematic qualitative description of the ICDs which comprise our final sample (N = 28; 28 clinical trials across 13 unique sites). Coders demonstrated good reliability (κ = .683). RESULTS:Qualitative analyses revealed that most of the coding aligned with expectations based upon the psychedelics bioethics literature, such as the emphasis on mental health risks and physical risks in ICDs. Notably, psychedelic-specific codes (e.g., ineffability, therapeutic touch) did not appear as frequently in ICDs. CONCLUSIONS:Scholars in psychedelic bioethics have called for the inclusion of a variety of potential risks and benefits in ICDs. It will be important to continue debating which elements are worth including in ICDs such that potential research participants are presented with the most salient factors relevant to their decision about joining a study. We provide a table of best practices applied by our sample of ICDs.
BACKGROUND:Nudging is a behavioral economics concept that describes subtle influences on decisions without restricting options or altering incentives. Though commonly studied in public health, the ethical implications in pediatric critical care are underexplored. This study investigates pediatric intensivists' perspectives on the ethical permissibility of three nudging techniques-framing, saliency, and default. METHODS:This is a multi-center survey of pediatric intensivists in which a sample of physicians were presented with 4 clinical scenarios representing framing, saliency, and default nudges. Responses about ethical permissibility for each scenario were assessed via Likert Scale and free text. Physician and institutional demographics were also collected. Data was collected in REDCap and analyzed using descriptive statistics for demographic data and scenario responses, with median and interquartile ranges (IQR) reported for Likert scale variables. Comparative and correlational analyses evaluated relationships between ethical permissibility, participant characteristic, and responses to nudging techniques across the scenarios. RESULTS:402 surveys were distributed with 132 (33%) completed. Results show a wide range in ethical permissibility of nudging techniques with the widest variability in the application of saliency. An equal number of physicians found negative framing to be "not at all" ethically permissible as "extremely" ethically permissible. Negative saliency showed a statistically significant positive correlation with how often the physician uses the technique, and how much that physician believes saliency affects the family's choice. There was also case-dependent variation in ethical permissibility with negative saliency found to be more ethically permissible in severe traumatic brain injury and positive saliency viewed as more ethically permissible when considering tracheostomy. Qualitatively, variable responses were given for each technique. Intensivists reported a wide range of use of nudging techniques. CONCLUSIONS:Our study suggests there is wide variability in nudging utilization and perceived ethical permissibility. The use of framing, saliency, and default communication techniques is nuanced and further understanding of choice architecture is essential to understand how physicians can optimally engage in shared decision-making with families.
BACKGROUND:Increasing interest in deploying artificial intelligence tools in clinical contexts has raised several ethical questions of both normative and empirical interest. One such question in the literature is whether "responsibility gaps" (r-gaps) are created when clinicians utilize or rely on such tools for providing care, and if so, what to do about them. These gaps are particularly likely to arise when using opaque, "black box" AI tools. Compared to normative and legal analysis of AI-generated responsibility gaps in health care, little is known, empirically, about health care providers views on this issue. The present study examines clinician perspectives on this issue in the context of black box AI decisional support systems (BBAI-DSS) in advanced heart failure. METHODS:Semi-structured interviews were conducted with 20 clinicians (14 cardiologists and 6 LVAD nurse coordinators). Interviews were transcribed, coded, and thematically analyzed for salient themes. All study procedures were approved by local IRB. RESULTS:We found that all clinicians voiced that, if someone were responsible for the use and outcomes of black box AI, it would be physicians. We compare clinician perspectives on the existence of r-gaps and their impact on responsibility for errors or adverse outcomes when BBAI-DSS tools are used against a taxonomy from the literature, finding some clinicians acknowledging an r-gap and others denying it or its relevance in medical decision-making. CONCLUSION:Clinicians varied in their view about the existence of r-gaps but were united in their ascriptions of physician responsibility for the use of BBAI-DSS in clinical care. It was unclear at times whether these were descriptive or normative judgments (i.e., is it merely inevitable physicians will be responsible, or is it morally appropriate that they be held responsible?) or both. We discuss the likely normative inadequacy of such a conception of physician responsibility for BBAI tool use.
When clinical trials fail to enroll diverse study populations, a multitude of consequences can occur, including compromised validity and generalizability, safety and efficacy uncertainties, regulatory limitations, widened disparities, distrust in science and medicine, and undermined efforts to address urgent health needs. We developed the Representative Studies Rubric (RSR), a questionnaire that evaluates the extent to which clinical trials are designed to enroll representative study populations with a focus on age, ethnicity, drug use, gender, pregnancy, race, and sex assigned at birth. We used the RSR to conduct an analysis of all active studies in the NIH-funded HIV/AIDS Clinical Trials Networks (Networks) and identified patterns of research practices that may limit the participation of underrepresented populations, with ethical implications. The Networks subsequently formalized the RSR as a required protocol development tool for all future studies to correct exclusionary research practices with the goal to achieve more representative study populations.
Background: This study examines the views of bioethicists in the US and Canada on incorporating social justice into their work and the field more broadly. Methods: Through an iterative process with leaders in bioethics, we created a survey and distributed it via bioethics listservs and individual emails. Results: Ultimately, we received responses from 355 bioethicists in the US and Canada. Respondents showed strong support for integrating social justice concerns, with 80% endorsing its inclusion in bioethics and 75% believing it should be a key aim of bioethics scholarship. However, engagement with specific social justice topics varied, and perceptions about institutional support for doing so were mixed. Early-career bioethicists were more likely to support integrating social justice into bioethics. Conclusion: Our findings highlight the importance of prioritizing social justice within bioethics and underscore the need for institutional support to advance these efforts.
It is increasingly common for bioethicists to consult with the public to solicit their judgments and attitudes about ethical questions and issues, especially ones that arise with new and emerging technologies. However, it is not always clear what the purpose of this engagement is or ought to be: do bioethicists seek the input of the public to help them arrive at a morally correct justified policy position, or do they seek this input to help them shape and frame their already-established moral position, or something else entirely? In this essay, we discuss four distinct possible functions of collecting moral judgments from the public: issue spotting, messaging for adherence and social stability, substantive moral guidance, and procedural fairness. For each function, we offer core examples from the literature before discussing the strengths and weaknesses attendant to each. We conclude with several preliminary questions bioethicists can ask themselves to clarify their own purpose for soliciting moral judgments from the public.
