AJOB Empirical Bioethics最新文献

{"title":"Psychological Harms of HIV Vaccine Trial Participation in Tanzania: Could Post-Trial Participants Engagement Help?","authors":"Judith Shayo, Amani Anaeli, David Urassa, Adamu Addissie, Eligius Lyamuya, Connie M Ulrich","doi":"10.1080/23294515.2026.2675971","DOIUrl":"10.1080/23294515.2026.2675971","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Aim: </strong>This study aimed to explore psychological harms experienced by former trial participants after participation in HIV vaccine trials in Tanzania.</p><p><strong>Methodology: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"106-119"},"PeriodicalIF":0.0,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148219944","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Information about Clinical Ethics Consultation Services on US Hospital Websites.","authors":"Melina Peshoff, Magdelynne Lowy, Marion Danis, Benjamin Krohmal, Elizabeth Lanphier, Jake Earl","doi":"10.1080/23294515.2026.2632094","DOIUrl":"10.1080/23294515.2026.2632094","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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%).</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"77-84"},"PeriodicalIF":0.0,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146229077","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"It's an Uphill Battle. We Have a Long Way to Go\": Perspectives of Canadian Individuals Living with Genetic Conditions Detectable by Prenatal Cell-Free DNA Screening.","authors":"Mathilde Cassou, Vardit Ravitsky, Anne-Marie Laberge","doi":"10.1080/23294515.2026.2691708","DOIUrl":"10.1080/23294515.2026.2691708","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>These perspectives, informed by lived experiences, should inform recommendations on the implementation of prenatal screening in Canada.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"120-128"},"PeriodicalIF":0.0,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148309830","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical Considerations for AI-Enabled Voice Analysis: Features of an Emerging Bioethics Literature.","authors":"Michele D Anzabi, Austin M Stroud, Richard R Sharp","doi":"10.1080/23294515.2026.2632091","DOIUrl":"10.1080/23294515.2026.2632091","url":null,"abstract":"<p><strong>Background: </strong>With the emergence of voice as a digital biomarker for various health conditions over the last decade, healthcare institutions are exploring avenues to leverage this technology to improve patient outcomes and clinical workflow efficiencies. Voice analysis technologies have the potential to streamline clinical care from speech-based diagnoses to assessing disease risk. This interest in healthcare innovation must also correspond with an understanding of the scope of ethical concerns and focal points that exist within this emerging literature.</p><p><strong>Methods: </strong>Given the significant discourse outside traditional ethics journals, we conducted a review of the literature focusing on artificial intelligence (AI)-enabled voice analysis technologies for clinical diagnosis and monitoring purposes to inform the practice of AI ethics scholars, consultants, and instructors. Studies were published between 2010 and 2023 in PubMed, Web of Science, Scopus, OVID Embase, or Google Scholar. We evaluated 1871 articles, with 48 articles included in the final review that explore the ethics of clinical applications.</p><p><strong>Results: </strong>Clinical applications of these technologies centered around using voice data for diagnosis of pulmonary and neurological conditions, mental health screening, provider decision-making assistance, and remote patient monitoring. Key themes related to ethics included: ethical design and validation; data privacy and security; health equity; trust, transparency, and accountability; alterations to the physicia-patient relationship; and current guidelines and policies.</p><p><strong>Conclusions: </strong>As healthcare systems work to create policies and best practices for voice analysis technologies, further research is necessary to understand the perspectives of stakeholders who will be essential for the adoption of these technologies.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"61-76"},"PeriodicalIF":0.0,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147373354","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Canadian Medical Assistance in Dying (MAID) and Access to Resources: An Analysis of Media Reports.","authors":"Anurima Chattopadhyay, Yukiko Asada, Leslie Anne Campbell, Michel Grignon, Mira Raju, Nathan K Smith, Scott Y H Kim","doi":"10.1080/23294515.2026.2658449","DOIUrl":"10.1080/23294515.2026.2658449","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"85-93"},"PeriodicalIF":0.0,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147730289","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Do Reasons Matter? An Empirical Exploration of the Role of Parents' Reasons in Treatment Refusal in Pediatric Oncology.","authors":"Amy Caruso Brown, Bryanna Moore, Lynn Gillam","doi":"10.1080/23294515.2026.2658455","DOIUrl":"10.1080/23294515.2026.2658455","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>This was an exploratory, pilot qualitative study. Data was collected through semi-structured interviews with pediatric oncologists (<i>n</i> = 9) and clinical ethics consultants (<i>n</i> = 9), organized around two hypothetical cases of treatment refusal in pediatric oncology. Transcripts were coded in MAXQDA and analyzed using inductive content analysis.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"94-105"},"PeriodicalIF":0.0,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147730299","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Medical Sanctions and the Response of Pharmaceutical Companies to Russia's Invasion of Ukraine: A Thematic Analysis.","authors":"Christopher A Bobier, Krisha Darji, Daniel J Hurst","doi":"10.1080/23294515.2025.2576837","DOIUrl":"10.1080/23294515.2025.2576837","url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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 <i>via</i> thematic content analysis to understand the responses of individual companies.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"1-8"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145313980","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical Dilemmas at Student-Run Clinics: A Narrative Review.","authors":"Nicholas Peoples, Alexandra Alvarez, Shiwei Wang, Emily Wang, Ashley Ricciardelli, Shangzhi Xiong, Dana L Clark","doi":"10.1080/23294515.2026.2632087","DOIUrl":"10.1080/23294515.2026.2632087","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>We searched PubMed, Embase, Ovid Medline, Web of Science, and SCOPUS, reviewed all publications in the non-indexed <i>Journal of Student Run Clinic</i> and <i>The Free Clinic Research Collective</i>, and iteratively snowball sampled the bibliographies and Google Scholar \"cited by\" results of included publications until saturation. We performed thematic analysis of included publications.</p><p><strong>Results: </strong>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.</p><p><strong>Discussion: </strong>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.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"30-41"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147469487","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Differences Between Government, Consortium, and Private Database Stewards Impacting the Genomic Data Market: A Survey of U.S. Academic Genetic Researchers.","authors":"Amanda K Greene, J Denard Thomas, Kaitlyn Jaffe, Luyun Chen, Kerry A Ryan, Brian J Zikmund-Fisher, J Scott Roberts, Amy L McGuire, Katherine Hendy, Kayte Spector-Bagdady","doi":"10.1080/23294515.2026.2632088","DOIUrl":"10.1080/23294515.2026.2632088","url":null,"abstract":"<p><strong>Background: </strong>Despite major shifts in U.S. federal government data sharing requirements, their impact, and relation to researcher choice of database, are underexplored. This study surveyed genetic researchers regarding trends, priorities, perceptions of quality, impact on research outcomes, and genomic data sharing and use across government, consortium, and private databases.</p><p><strong>Methods: </strong>As part of an exploratory sequential mixed methods project, we surveyed 294 U.S.-based genomic academic researchers.</p><p><strong>Results: </strong>Genetic researchers generally have a choice between databases, which allows them to prioritize data quality. This might explain recent trends toward the use of government and consortium databases away from private ones. Respondents reported several significant differences in the requirements that different data stewards place on them, which impact their work. Private data stewards generally had the most restrictions and were the least likely to allow users to release the full dataset at completion, despite over 50% of respondents reporting the use of federal funds for such research. Our findings indicate that upstream benefits (i.e., access, database features) are more impactful on researchers' choice in databases than downstream publication limitations (e.g., co-authorship, limited data release). Respondents also reported the time necessary to share data as the biggest barrier to contributing to government databases and non-comprehensiveness as the biggest challenge to using existing government data.</p><p><strong>Conclusions: </strong>The federal government can leverage these findings about researcher priorities to continue attracting researchers, to push forward goals related to open science and enabling advances for patients underrepresented in genetic research, and to found new genomic data sharing policy moving forward.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"20-29"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13082761/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147366730","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Scanning the Horizon of Sociogenomics: an Assessment of the Development and Growth of Polygenic Indices for Social and Behavioral Traits.","authors":"Courtney Canter, Karen M Meagher, R Jean Cadigan, Amy M Koopmann, Sara Watson, Matthew Kucmanic, Seung Woo Ban, Thanh Tran, Maria Hromcenco, Kathleen J Foley, Shawneequa Callier, Jeremy J Lamb, Anya E R Prince","doi":"10.1080/23294515.2025.2576839","DOIUrl":"10.1080/23294515.2025.2576839","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>This article utilizes horizon scanning methodology to track academic and lay literature regarding PGIs.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"9-19"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12680066/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145402304","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}