Recently, the possibility of extending the so-called 14-Day Rule on human embryonic research has received increased attention, but many ethical, legal, scientific and logistical questions about doing so remain. When the 14-Day Rule was developed in 1979, human embryos could only be cultured for 3-5 days. Recently, embryos have been cultured for up to 13 or 14 days, which has the potential to provide important health benefits. Statements advocating extending the Rule have all stipulated that public engagement is essential. But crucial challenges arise, which have received relatively little attention, regarding specifically what and how to communicate about these controversial topics to policymakers, journalists and the public-what precisely to convey, how exactly such public discussions should occur, what content such communication should include, what obstacles may emerge and how best to respond to these barriers. Particular ethical, attitudinal, psychological, political, historical, educational and logistical obstacles emerge. Terms other than embryo 'destruction', for instance, may help. Empirical survey research is urgently needed to comprehend how policymakers and the public view and understand these issues and what educational approaches will be most effective. This paper examines challenges that emerge, suggests ways of addressing these and highlights needs for enhancing education, communication and literacy concerning relevant scientific and ethical issues. The enactment of ethically informed policy requires attention to not only what policies to pursue but how to communicate about these to stakeholders. Advocates for extensions of the Rule should recognise and begin to address these challenges as soon as possible.

As artificial intelligence (AI) tools are increasingly integrated into healthcare settings, their application to ethically complex care decisions for patients who lack decision-making capacity and identifiable surrogates remains largely unexplored. This study explored ethics consultants’ perspectives on the use of artificial intelligence (AI) in ethical and clinical decision-making for patients who are incapacitated with no evident advance directives or surrogates (INEADS). We conducted a qualitative study using in-depth semi-structured interviews with 19 ethics consultants across nine U.S. states, analyzed using thematic analysis. Three themes were generated. Theme 1, Human Accountability as a Non-Negotiable Boundary, captured ethical concerns including clinician accountability, AI’s inability to capture individual context, and algorithmic bias risk. Theme 2, Designing AI That Reflects the Complexity of INEADS Care, identified requirements for high-quality training data, interdisciplinary development teams, and explainability. Theme 3, A Conditional and Constructive Vision for AI as Supportive Tool, described applications encompassing surrogate identification, goals-of-care facilitation, longitudinal decisional pattern review, and individualized prognostication. Participants framed AI as a resource to support rather than replace human moral judgment, raised concerns about algorithmic bias and institutional variation, and articulated a constructive vision grounded in prior natural language processing work identifying INEADS patients across care settings. Ethics consultants expressed conditional acceptance of AI in INEADS care when used to support, not replace, accountable human judgment. Findings highlight the need for equity-centered design, transparent communication of data limitations, interdisciplinary development, and ethics consultant involvement in validation before clinical implementation.

Genetic testing is now routinely recommended for autism and/or intellectual disability (ID), but how parents deal with the uncertainties that may be involved has not been explored. We interviewed 28 parents who had received results identifying de novo genetic variants responsible for their offspring's autism. Parents faced six broad types of ambiguities concerning: cause of the de novo variant, likelihood of medical manifestations, children's future independence and support needs, availability of future medical benefits/treatments, potential social benefits and potential social harms. These ambiguities prompted anxiety/stress. Parents tried to manage these uncertainties in several ways: focusing on the child's immediate needs, seeking more information, seeking bases of comparison in other children, monitoring for future symptoms (and often enlisting others to do so), seeking metaphors and conceptual frameworks to understand uncertainties, making and accepting trade-offs, and participating in research. Several factors influence these uncertainties and responses, including age/life-stage of the child, psychological factors, concerns about the future of the broader healthcare and insurance systems, potential differences due to geography (e.g., local variations in medical, social and educational services available) and scientific background and literacy. Members of a couple also often perceive and respond to these issues differently. These data, the first to examine the ambiguities that arise when receiving genetic diagnoses for their autistic offspring with ID, reveal the key roles of several social factors and have important implications for future research, education of families, and training and practice of healthcare providers, teachers, social service agencies, policymakers and others.

Increasingly, new legal measures are restricting the use of gender-affirming care, raising challenges not only for the medical care of transgender/gender-nonbinary individuals, but also for medical research and research ethics. These restrictions may discourage researchers from conducting various types of research with transgender/gender-nonbinary individuals, such as asking about sexual behavior and gender identity or related issues in studies of adolescents and young adults more broadly. Researchers and institutions may also face professional risks in pursuing such research. Thus, restrictions on the use of gender-affirming care have important implications for researchers, institutional review boards (IRBs), institutional officials, policy-makers, and others. Restrictions could have an impact on the design, implementation, and management of research studies, potentially requiring consent form modifications, reconsent of participants, and asking participants about possible resulting physical/legal/social problems. Researchers and IRBs need to carefully assess these shifting legal restrictions. Input from legal experts may be needed concerning the interpretation, implementation, and enforcement of local and federal legal measures for initial and continuing IRB review of research protocols and the assessment of any changes to relevant legal measures. Researchers, IRBs, and others thus need to recognize, address, and develop "best practices" regarding these new restrictions.

As surrogacy grows, many states and countries are enacting or considering relevant regulations, while others oppose it. Ethical, legal and policy questions arise: how to balance the rights of various kinds of parents (e.g., heterosexual and same-sex couples and single individuals) against the rights and well-being of surrogates. Concerns include risks of exploitation, autonomy, benefits of enabling prospective parents to create loving families, and mitigating possible harms through regulations. Though a few instances of abuse have been reported in developing countries, these do not appear to have occurred in developed countries, where robust regulations exist. The limited data available on surrogates in general (i.e., including traditional and non-commercial surrogacy) do not suggest exploitation or trafficking. In 2021, New York State enacted robust regulations allowing commercial surrogacy. Subsequent competing bills have sought to loosen or enhance certain restrictions. These regulations may be a model for commercial surrogacy regulations elsewhere, but certain ethical, legal and policy questions remain (e.g., where to draw the line to prevent trafficking). Additional data and exploration of these challenges are crucial.

Pre-exposure prophylaxis (PrEP) is a proven strategy for HIV prevention, yet uptake among women vulnerable to HIV remains low. This study draws on survey data and urine-based adherence testing from the American Women Assessing Risk Epidemiologically (AWARE) study to assess PrEP knowledge, use, and adherence in a behaviorally vulnerable sample. Despite high awareness of PrEP, actual use and willingness to consider PrEP were minimal. Objective adherence testing showed that most women who self-reported current PrEP use adhered to the daily regimen. Findings suggest that socioeconomic status, insurance coverage, relationship dynamics, and health literacy influence PrEP engagement. The small number of PrEP users underscores persistent barriers, including misinformation and medication affordability. Addressing these factors is critical to converting awareness into sustained use. Future prevention efforts should prioritize improving PrEP health literacy and expanding access to affordable medication. These findings highlight the need for targeted interventions that address the intersecting structural and informational barriers to PrEP uptake among women in the U.S.

Many questions arise concerning how and why chaplains enter the field. Interviews of similar to 1 one hour each were conducted with 23 U.S. chaplains. Chaplains vary widely in professional and personal backgrounds and experiences, which they often draw on in their work. Personal experiences can lead them to enter the field, enhance their empathy and strengthen their commitment. They have frequently faced significant trauma (e.g., parent's death) or helped family and/or friends with end-of-life challenges. Chaplains often entered other fields first (e.g., clergy, business or healthcare), but they often had incomplete or incorrect prior knowledge about the field. Prior experiences can also affect their work (e.g., in recognizing the power of silence). A sense of personal "calling" frequently leads chaplains to find their work deeply rewarding and sustaining. These data, the first to explore how and why chaplains enter the field, have critical implications for future practice, education and research.

New anti-obesity medications (AOMs) have received widespread acclaim in medical journals and the media, but they also raise critical ethical, public health, and public policy concerns that have largely been ignored. AOMs are very costly, need to be taken by a patient in perpetuity (since significant rebound weight gain otherwise occurs), and threaten to shift resources and focus away from other crucial efforts at obesity treatment and prevention. Many people may feel less motivated to exercise or reduce their caloric consumption, if they assume that obesity is now medically treatable. Policy-makers may similarly come to feel that the solution to the obesity pandemic is simply to prescribe medications and that prevention efforts are far less necessary. These drugs raise concerns about justice (since AOMs will disproportionately benefit the wealthy), medicalization, and marketing. Policy-makers, clinicians, and others need to engage in multipronged educational and policy efforts to address these challenges.

BACKGROUND:Autism self-advocates' views regarding genetic tests for autism are important, but critical questions about their perspectives arise. METHODS:We interviewed 11 autism self-advocates, recruited through autism self-advocacy websites, for 1 h each. RESULTS:Interviewees viewed genetic testing and its potential pros and cons through the lens of their own indiviudal perceived challenges, needs and struggles, especially concerning stigma and discrimination, lack of accommodations and misunderstandings from society about autism, their particular needs for services, and being blamed by others and by themselves for autistic traits. Their views of genetic testing tended not to be binary, but rather depended on how the genetic test results would be used. Interviewees perceived pros of genetic testing both in general and with regard to themselves (e.g., by providing "scientific proof" of autism as a diagnosis and possibly increasing availability of services). But they also perceived disadvantages and limitations of testing (e.g., possible eugenic applications). Participants distinguished between what they felt would be best for themselves and for the autistic community as a whole. When asked if they would undergo testing for themselves, if offered, interviewees added several considerations (e.g., undergoing testing because they support science in general). Interviewees were divided whether a genetic diagnosis would or should reduce self-blame, and several were wary of testing unless treatment, prevention or societal attitudes changed. Weighing these competing pros and cons could be difficult. CONCLUSIONS:This study, the first to use in-depth qualitative interviews to assess views of autism self-advocates regarding genetic testing, highlights key complexities. Respondents felt that such testing is neither wholly good or bad in itself, but rather may be acceptable depending on how it is used, and should be employed in beneficial, not harmful ways. These findings have important implications for practice, education of multiple stakeholders, research, and policy.

While progress has been made in reducing HIV incidence rates among cisgender women, it continues to fall short of reaching the goal of ending the HIV epidemic with no new cases. This study aims to use innovative electronic methods (e.g., social media with community-informed advertisements) to recruit and retain a large (N = 1,800), diverse national sample of women at higher risk for HIV seroconversion who are 14 years of age and older to better understand the predictors of HIV-related sexual risk and HIV incidence within the context of a theoretically-grounded social-ecological framework. A US-based national longitudinal cohort study was launched among cisgender women with greater likelihood of HIV seroconversion Participants complete a survey with items related to demographics, substance use, mental health symptoms, interpersonal violence and other social factors. Biospecimens include self-collected vaginal and rectal swabs, and blood in microtainers to test for HIV, syphilis, chlamydia, gonorrhea, and trichomoniasis every 6 months for 2 years. Participant recruitment began in June 2023 and baseline enrollment is scheduled to finish in July 2025. Innovative and culturally sensitive strategies to improve access to HIV prevention and treatment services for cisgender women are vital to curb the burden of the HIV epidemic for this key population. Findings from this study will inform future research, intervention strategies, and public policies.

Including adolescent men who have sex with men (AMSM) in HIV prevention and treatment studies without parental permission is vital, but has often faced barriers. We examine the case of recent Institutional Review Boards (IRB) reviews of an HIV treatment and prevention study that requested waiving parental permission at four United States sites, but received different responses from each institution. IRBs varied in whether and how they weighed parental rights against AMSMs' rights and individual and social benefits, and potential harms (e.g., if a parent disapproves of the adolescents' sexual behavior). One IRB "tabled" the decision to receive advice from the university Office of General Counsel (OGC), despite state laws allowing minors to consent to HIV testing and treatment without parental permission. Another IRB consulted the university's Chief Compliance Officer (CCO), which thought the waiver was inconsistent with state law, which discusses "venereal disease," but not HIV. University attorneys may have competing priorities, however, and thus interpret relevant laws differently. This case raises critical concerns, highlighting needs for advocates for AMSM, researchers, IRBs and others at institutional, governmental, and community levels to educate policymakers, public health departments, IRB chairs, members, and staff, OGCs and CCOs about these issues.

Serum and peripheral blood leukocytes from wild yellow baboons (Papio hamadryas cynocephalus) were tested for the presence of STLV-1-specific antibodies and proviral DNA. Fourteen of 30 sera tested positive by radioimmunoprecipitation assay (RIPA) with HTLV-1. Among 36 DNA samples tested by PCR 15 were positive by double nested PCR for a fragment of the STLV-1envgene, the most sensitive assay among PCR tests employed. Of 30 animals that were tested both serologically and by PCR in only 1 case were the results discordant (PCR-positive, antibody-negative). The DNA sequences fromenv(378 bp),pol(212 bp), andLTR(705 bp) were determined for 5, 5, and 2 Mikumi STLV-1 isolates, respectively. The DNA sequences of Mikumi STLV-1 isolates were virtually identical and phylogenetic analysis revealed that they were clearly distinct from previously published baboon STLV-1 sequences, including those STLV-1 isolates presumed to be from yellow baboons. The results of this study suggest that reliable placement of individual STLV-1 within the PTLV-1 phylogeny requires genomic sequences of STLV-1 isolates from wild animals whose taxonomic identity and geographical origin are firmly established and that the LTR is the genomic region of STLV-1 which is the most informative for cladistic analysis of these viruses.

Advance care planning is important and timely for patients receiving home health services; however, opportunities to facilitate awareness and engagement in this setting are often missed. This qualitative descriptive study elicited perspectives of home health nurses and social workers regarding barriers and facilitators to creating advance care plans in home health settings, with particular attention to patients with few familial or social contacts who can serve as surrogate decision-makers. We interviewed 15 clinicians employed in a large New York City-based home care agency in 2021-2022. Participants reported a multitude of barriers to supporting patients with advance care planning at the provider level (eg, lack of time and professional education, deferment, discomfort), patient level (lack of knowledge, mistrust, inadequate support, deferment, language barriers), and system level (eg, discontinuity of care, variations in advance care planning documents, legal concerns, lack of institutional protocols and centralized information). Participants noted that greater socialization and connection to existing educational resources regarding the intended purpose, scope, and applicability of advance directives could benefit home care patients.

Recent research has described broad types of healthcare chaplains' activities, but many questions remain about how these professionals perform these tasks, whether variations occur, and if so, in what ways. Twenty-three chaplains were interviewed in-depth. Chaplains described engaging in highly dynamic processes, involving both verbal and non-verbal interactions. They face challenges and vary in ways of starting interactions, using verbal and non-verbal cues, and communicating through physical appearance. In these processes, when entering patients' rooms, they seek to "read the room," follow patients' leads, look for cues, match the energy/mood in the room, and adjust their body language appropriately, while maintaining open-ended stances. They face choices of what, if anything, to communicate through clothing (e.g., wearing clerical collars or crosses) and can confront additional challenges with members of groups different than their own, at times requiring further sensitivity. These data, the first to examine challenges chaplains confront entering patients' rooms and engaging in non-verbal communication, can enhance understandings of these issues, and help chaplains and other healthcare professionals provide more sensitive and astute context-based care. These findings thus have critical implications for education, practice, and research concerning chaplains and other providers.

ObjectivesHome health care patients who are at risk for becoming Incapacitated with No Evident Advance Directives or Surrogates (INEADS) may benefit from timely intervention to assist them with advance care planning. This study aimed to develop natural language processing algorithms for identifying home care patients who do not have advance directives, family members, or close social contacts who can serve as surrogate decision-makers in the event that they lose decisional capacity.DesignCross-sectional study of electronic health records.Setting and ParticipantsPatients receiving post-acute care discharge services from a large home health agency in New York City in 2019 (n = 45,390 enrollment episodes).MethodsWe developed a natural language processing algorithm for identifying information documented in free-text clinical notes (n = 1,429,030 notes) related to 4 categories: evidence of close relationships, evidence of advance directives, evidence suggesting lack of close relationships, and evidence suggesting lack of advance directives. We validated the algorithm against Gold Standard clinician review for 50 patients (n = 314 notes) to calculate precision, recall, and F-score.ResultsAlgorithm performance for identifying text related to the 4 categories was excellent (average F-score = 0.91), with the best results for “evidence of close relationships” (F-score = 0.99) and the worst results for “evidence of advance directives” (F-score = 0.86). The algorithm identified 22% of all clinical notes (313,290 of 1,429,030) as having text related to 1 or more categories. More than 98% of enrollment episodes (48,164 of 49,141) included at least 1 clinical note containing text related to 1 or more categories.Conclusions and ImplicationsThis study establishes the feasibility of creating an automated screening algorithm to aid home health care agencies with identifying patients at risk of becoming INEADS. This screening algorithm can be applied as part of a multipronged approach to facilitate clinician support for advance care planning with patients at risk of becoming INEADS.

Genetic testing is recommended as part of an autism assessment, and most parents support genetic testing for their minor children. However, the impact on parents of receiving a monogenetic/ copy number variant diagnosis for autism in their child is not well understood. To explore this, we surveyed and interviewed parents of children in the SPARK study, a study of autism that includes genetic testing. Surveys were administered one month before and one and 12 months after parents received their child’s genetic result. Interviews were conducted approximately one month after results disclosure. A genetic diagnosis (GD) for their child appeared to reduce parents’ sense of self-blame and feelings of guilt, and this impact was relatively stable. The data also indicate a modest impact on parents’ actions related to the condition, perceptions of themselves, and some aspects of life planning for their child, as measured by quantitative instruments at one month and 12 months after receipt of results. Other measures of parental identity and expectations for their child, in contrast, showed little change following receipt of genetic findings. Overall, parents who were told that no GD was identified showed minimal changes in their responses over time. These results suggest a discernable but relatively limited impact of genetic test results on parents of children with autism. These results should be reassuring to clinicians caring for children with autism and are consistent with studies in other areas of medicine that have suggested that genetic results tend to have fewer effects—negative or positive—than were anticipated.

Abstract Medicine and religion both help combat the terror of death, but the two have had a long, complex marriage. Medicine today focuses on scientific facts. Religion and spirituality are subjective but nonetheless influence doctors and patients, both directly and indirectly—including in how they make medical decisions. This chapter examines how patients often want to discuss religion and spirituality with their physicians, but most doctors rarely, if ever, broach these realms. Almost always, patients are the ones who initiate these conversations, and physicians frequently change the topic, partly due to inadequate training, especially, regarding beliefs much different from their own. Doctors also face increasing pressures and have less time for such conversations. This reticence, however, can significantly impede communication and relationships with patients. Though avoided by physicians, these topics commonly preoccupy and vex patients and families. Doctors should be prepared to acknowledge and respond to such patient concerns, but often do not do so.

1Professor of psychiatry, and director, Masters of Bioethics Program, Columbia University, New York, New York; email: [email protected]; ORCID: https://orcid.org/0000-0002-6827-8063. Acknowledgments: The author thanks Patricia Contino for assistance with preparing the manuscript. Funding/Support: None reported. Other disclosures: None reported. Ethical approval: Reported as not applicable. First published online.