Public Affairs, Public Policy and Public Administration Commons^™

Examining Treatment Options In Youth With Major Depressive Disorder: Observations From The Tx-Ydsrn Registry Study, Emine Rabia Ayvaci, Karabi Nandy, Ryan Becker, Laura Stone, Abu Minhajuddin, Holli Slater, Lynnel C Goodman, Sarah M Wakefield, Eric A Storch, Joseph C Blader, Cesar A Soutullo, Graham J Emslie, Madhukar H Trivedi

Center for Medical Ethics and Health Policy Staff Publications

Objective: Treatment decisions for depression are a complex process, influenced by factors such as clinical characteristics, socioeconomic factors, and patient/caregiver preferences. This study examines the characteristics of treatment options during the first month of enrollment among depressed youth.

Methods: Data for 646 depressed youth were extracted from the Texas Youth Depression and Suicide Research Network study. Participants' treatments during the first month were categorized as no treatment (NT), psychotherapy only (THER), pharmacotherapy only (MED), or a combination of psychotherapy and pharmacotherapy (COMB). Sociodemographic and clinical features were compared across these treatment types.

Results: 7% were on NT, 5% on THER, …

Reframing Stigma In Tourette Syndrome: An Updated Scoping Review, Kelly Pring, Melina Malli, Brandy W Hardy, Stephen R Rapp, Eric A Storch, Jonathan W Mink, Jaclyn M Martindale

Center for Medical Ethics and Health Policy Staff Publications

Persistent tic disorders (PTD) such as Tourette's syndrome (TS) are common childhood-onset neurodevelopmental disorders. Stigmatization of individuals with these disorders remains an ongoing problem. The purpose of this scoping review is to serve as an updated review of the research regarding stigmatization in youth with PTD since the publication of the original systematic review about this topic in 2016. The electronic databases Embase, Web of Science, PubMed, PsycINFO, and CINAHL were searched. Of the 4751 initial articles screened after removing duplications, 47 studies met the inclusion criteria. The studies were examined under the social-ecological stigmatization model, which helps categorize stigmatization …

When Families Bridge The Research-Clinical Divide: An Exploration Of Values Regarding Cascade Screening In Genomic Research, Katherine E Bonini, Lauren R Desrosiers-Battu, Ann Katherine M Foreman, Nuriye N Sahin-Hodoglugil, Mary A Majumder, Candice R Finnila, Stephanie A Kraft, Laura M Amendola, Eimear E Kenny, Stephanie M Fullerton, Sara L Ackerman, Benjamin S Wilfond, Amy L Mcguire, Hadley Stevens Smith

Center for Medical Ethics and Health Policy Staff Publications

Purpose: Genetic results are important for both patients and their biological relatives. However, cascade screening (CS) uptake is low, especially when testing occurs through research programs and not clinical care. Ethical guidance is needed for CS implementation when individuals receive clinical genetic results through research.

Methods: We conducted focus groups with 3 groups of individuals in the Clinical Sequencing Evidence-Generating Research Consortium: clinicians, patient representatives, and scholars of the ethical, legal, and social implications of genomics. We used inductive thematic and comparative analyses to analyze data within and across the groups.

Results: All participants (n = 27) agreed that …

A Landscape Analysis Of Psychedelic Retreat Organizations Advertising Online, Logan Neitzke-Spruill, Caroline S Beit, Jill Oliver Robinson, Nikita Singh, Srijith Kambala, Rishi Ramesh, Amy L Mcguire

Center for Medical Ethics and Health Policy Staff Publications

Research into psychedelics' clinical potential has corresponded to a growth in public interest and adult use. One common pathway to accessing psychedelics is through psychedelic retreats. While individual retreats have been characterized in the anthropological literature, no systematic evaluation of the psychedelic retreat industry exists. Assessing the characteristics of the psychedelic retreat industry is critical to understanding the associated ethical, legal, and social implications and ensuring consumer safety. To this end, we conducted a landscape analysis of online, publicly available information to capture and characterize a broad range of organizations offering psychedelic retreats and marketing to English-speaking consumers. From July …

Patient-Centric Federated Learning: Automating Meaningful Consent To Health Data Sharing With Smart Contracts, Kristin M Kostick-Quenet, Marcelo Corrales Compagnucci, Mateo Aboy, Timo Minssen

Center for Medical Ethics and Health Policy Staff Publications

Federated Learning (FL) promises to enhance data-driven health research by enabling collaborative machine learning across distributed datasets without direct data exchange. However, current FL implementations primarily reflect the data-sharing interests of institutional controllers rather than those of individual patients whose data are at stake. Existing consent mechanisms-like broad consent under HIPAA or explicit consent under the GDPR-fail to provide patients with control over how their data is used. This article explores the integration of smart contracts (SCs) into FL as a mechanism for automating, enforcing, and documenting consent in data transactions. SCs, encoded in decentralized ledger technologies, can ensure that …

Advancing Medical Applications Of Cancer Nanotechnology: Highlighting Two Decades Of The Nci's Nanotechnology Characterization Laboratory Service To The Research Community, Rachael M Crist, Yechezkel Barenholz, Ahuva Cern, Kate N Clark, Pieter R Cullis, Cheryl Dean, Neil Desai, Mauro Ferrari, Matthieu Germain, Carmen A Giacomantonio, Emma Grabarnik, Piotr Grodzinski, Atara Hod, Barry E Kennedy, Ruvanthi N Kularatne, Glen S Kwon, Emmanuel Loeb, Erin B Noftall, Len Pagliaro, Morteza Rasoulianboroujeni, Alexander Roth, Darren Rowles, Kulbir Singh, Nicole F Steinmetz, Zhanna Yehtina, Yao Zhang, Daniel Zilbersheid, Jeffrey D Clogston, Stephan T Stern, Marina A Dobrovolskaia

Center for Medical Ethics and Health Policy Staff Publications

The Nanotechnology Characterization Laboratory (NCL) is a US federally funded resource providing characterization and expertise to the cancer nanomedicine research community. Founded as a formal partnership among the US National Cancer Institute (NCI), the US Food and Drug Administration (FDA), and the US National Institute of Standards and Technology (NIST), the NCL has spent two decades developing a one-of-a-kind service with broad multidisciplinary expertise to meet the needs of a rapidly evolving drug development field. To mark the 20th anniversary of the lab's founding, the NCL hosted a symposium to highlight the achievements of the cancer nanomedicine field, showcase novel, …

Adolescent And Caregiver Preparation For Legal Changes At Age 18, Blanca Sanchez-Fournier, Jordyn Babla, Mary Majumder, Beth H Garland, Constance M Wiemann, Albert C Hergenroeder

Center for Medical Ethics and Health Policy Staff Publications

Background: Most adolescents with special healthcare needs (ASHCN) will assume legal responsibility for making decisions about their medical treatment at age 18. Simultaneously, parents or other legal representatives (Caregivers) will lose ASHCN medical record access. This study examined ASHCN and Caregiver knowledge of, satisfaction with, and suggestions for improvement in preparing for these changes.

Methods: Eighty-three dyads (18-year-old ASHCN and Caregivers) completed an assessment to evaluate their knowledge about changes in responsibility for decision making with a focus on consent, satisfaction with the preparation received, and recommendations for improved preparation. Descriptive statistics and mean comparisons were used. Responses to open-ended …

Impact Of Personalized Risk Scores On Shared Decision Making In Left Ventricular Assist Device Implantation: Findings From A Qualitative Study, Holland Kaplan, Kristin Kostick-Quenet, Benjamin Lang, Robert J Volk, Jennifer Blumenthal-Barby

Center for Medical Ethics and Health Policy Staff Publications

Objective: To assess stakeholders' perspectives on integrating personalized risk scores (PRS) into left ventricular assist device (LVAD) implantation decisions and how these perspectives might impact shared decision making (SDM).

Methods: We conducted 40 in-depth interviews with physicians, nurse coordinators, patients, and caregivers about integrating PRS into LVAD implantation decisions. A codebook was developed to identify thematic patterns, and quotations were consolidated for analysis. We used Thematic Content Analysis in MAXQDA software to identify themes by abstracting relevant quotes.

Results: Clinicians had varying preferences regarding PRS integration into LVAD decision making, while patients and caregivers preferred real-time discussions about PRS with …

Moving Beyond Simplistic Research Design In Health Professions Education: What A One-Group Pretest-Posttest Design Will Not Prove, S Beth Bierer, Gary Beck Dallaghan, Nicole J Borges, Sam Brondfield, Cha Chi Fung, Kathryn N Huggett, Cayla R Teal, Satid Thammasitboon, Colleen Y Colbert

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Educational research presents unique study design challenges. Novice researchers in health professions education (HPE) frequently misuse the one-group pretest-posttest design, highlighting the need for improved training in research design. This workshop aimed to enhance understanding of research design among novice HPE researchers, specifically addressing the inherent limitations of the one-group pretest-posttest design and offering alternative approaches.

Methods: Experienced HPE researchers developed this workshop to address common misunderstandings of research design. Leaders from the AAMC Medical Education, Scholarship, Research, and Evaluation section facilitated 60-75-minute workshops conducted at the four 2024 regional meetings hosted by the AAMC Group on Educational Affairs …

Survivorship From Pediatric And Adult Brain Tumors: The 2024 Brain Tumor Epidemiology Consortium Meeting Report, Scott L Coven, Roberta Mckean-Cowdin, Michael E Scheurer, Kimberly J Johnson, Luc Bauchet, Carol Kruchko, Ching C Lau, Quinn T Ostrom, John Villano, Yan Yuan, Friederike Erdmann

Center for Medical Ethics and Health Policy Staff Publications

The Brain Tumor Epidemiology Consortium (BTEC) is an international organization with membership of individuals from the scientific community with interests related to brain tumor epidemiology, including surveillance, classification, methodology, etiology, and factors associated with morbidity and survival. The 2024 annual BTEC meeting entitled “Survivorship from Pediatric and Adult Brain Tumors” was held in Mainz, Germany, USA, on May 15–17, 2024. The meeting gathered scientists from Africa, Australia, Europe, and North America and included 4 keynote sessions focusing on brain tumor survivorship across the age spectrum. The meeting included 3 abstract sessions, which also included scientific talks around brain …

On Minimizing Risk And Harm In The Use Of Psychedelics, Jules Evans, Marc Aixalà, Brian T Anderson, William Brennan, Rebecka Bremler, Joost J Breeksema, Lisa Burback, Abigail E Calder, Robin L Carhart-Harris, Katherine Cheung, Neşe Devenot, Ingmar Gorman, Jakub Greń, Peter S Hendricks, Brian Holoyda, Edward Jacobs, Joy Krecké, Daniel J Kruger, David Luke, Tomislav Majić, Amy L Mcguire, Nicky J Mehtani, David S Mathai, Kristin Nash, Tehseen Noorani, Roman Palitsky, Oliver C Robinson, Otto Simonsson, Elin Stahre, Michiel Van Elk, David B Yaden

Center for Medical Ethics and Health Policy Staff Publications

Objective: This article outlines recommendations from 30 psychedelic researchers on how to create a better psychedelic safety net.

Methods: A survey of 30 psychedelic researchers asked them to identify key critical research gaps around psychedelic harm and safety.

Results: The critical research gaps identified by the authors included defining the main types of psychedelic harm, the predictors of those harms, and the most effective way to treat those harms. They also call for better support for those experiencing post-psychedelic difficulties, including better online information, peer support groups, affordable therapy, and psychiatric consultation and medication. Finally, the authors call for better …

Talking About Suffering In The Intensive Care Unit, Brent M Kious, Judith B Vick, Peter A Ubel, Olivia Sutton, Jennifer Blumenthal-Barby, Christopher E Cox, Deepshikha Ashana

Center for Medical Ethics and Health Policy Staff Publications

Background: Some have hypothesized that talk about suffering can be used by clinicians to motivate difficult decisions, especially to argue for reducing treatment at the end of life. We examined how talk about suffering is related to decision-making for critically ill patients, by evaluating transcripts of conversations between clinicians and patients' families.

Methods: We conducted a secondary qualitative content analysis of audio-recorded family meetings from a multicenter trial conducted in the adult intensive care units of five hospitals from 2012-2017 to look at how the term "suffering" and its variants were used. A coding guide was developed by consensus-oriented discussion …

Investigative Genetic Genealogy Practices Warranting Policy Attention: Results Of A Modified Policy Delphi, Christi J Guerrini, Louiza Kalokairinou, Jill O Robinson, Whitney Bash Brooks, Stephanie M Fullerton, Sara Huston, Jacklyn Dahlquist, Diana Madden, Norah Crossnohere, Nicola Campoamor, John F P Bridges, Amy L Mcguire

Center for Medical Ethics and Health Policy Staff Publications

A technique known as investigative genetic genealogy (IGG) was first introduced to criminal investigations in 2018, and it has since been used by U.S. law enforcement to help identify hundreds of criminal perpetrators and unidentified human remains. As expertise in IGG grows, policymakers have shown interest in regulating it. To help inform these efforts and to promote coherence in IGG governance as it expands, we recruited experts representing a spectrum of IGG-relevant professions and perspectives to identify and prioritize IGG practices for policy attention and to develop policy options for addressing them. In two rounds of a modified policy Delphi, …

Knowledge Diffusion In Networks Of Artificial Learners, Ehsan Beikihassan

Dissertations

The dissertation draws inspiration from the topic of peer learning in the social sciences and the study of information dissemination and knowledge diffusion in network science. In particular, it introduces and studies a setting involving a population or network of artificial learners, with the objective of optimizing aggregate performance measures under constraints on training resources. In this context, natural knowledge diffusion processes in networks of interacting artificial learners are studied. The term "natural" refers to processes that emulate human peer learning, where the internal state and learning processes of students remain largely opaque, and the main degree of freedom lies …

Front Matter - Zamani 1, No. 2, Editors Note

Zamani: A Journal of African Historical Studies

The editors are pleased to present to you the second issue of Zamani: A Journal of African Historical Studies. Volume 1 Number 2 has a collection of research and forum articles as well as book reviews. There are four articles that builds from field research with different themes spanning from neolithic to the postcolonial periods. The themes include new neolithic dating; smallpox control in early colonial period in the former German East Africa (now Tanzania, Rwanda and Burundi); evasion of colonial taxation; and the connection between land legislations and land conflicts among the peasant and pastoral communities. There are also …

New Chronology For Neolithic Cultures In The Lake Eyasi Basin, Northern Tanzania, Musa Said Mwitondi, Pastory Magayane Bushozi

Zamani: A Journal of African Historical Studies

There have been several studies on Neolithic Cultures in the Serengeti National. The recovered archaeological materials include domestic and wild fauna remains, potsherds and lithic artefacts, ochre, and stone enclosures, dating between 7200 and 4900 BP. In the East African Rift System (EARS), conventional ages for Neolithic Cultures are inferred from the most extensively researched Neolithic sites in Kenya, where the oldest Nderit ware, cattle and caprine in the Lake Turkana Basin, northern Kenya, date ca. 5200 BP. Studies on the Neolithic of EARS have been structured to fit into the migration or diffusion models that consider the spread of …

Smallpox Outbreaks And Immunization Policies In Tanzania From The Late Nineteenth Century To The First World War, Lorne Larson

Zamani: A Journal of African Historical Studies

An estimated 300 million people died globally from smallpox in the 20th century alone. There was very much a North/South divide in the existence of the disease in that period, with countries across South America, Africa and Asia recording the majority of cases. In 1966 the World Health Organization launched an intensive effort to finally eliminate the disease. The last known endemic case of smallpox was reported in Somalia in 1977, and that outbreak was promptly contained. In 1980 smallpox was declared eradicated – the only infectious disease affecting humans to achieve this distinction. This remains among the most notable …

'Evading The Tax Collector’: Native Responses To The Head Tax In Colonial Njombe, Tanzania, 1920-1960, Peter Chaula, Hezron Kangalawe

Zamani: A Journal of African Historical Studies

Tax collection was one of the core preoccupations of the colonial government in Tanganyika (now Tanzania) and other colonies in the Africa that persisted even after independence. Direct taxation formed the basis of colonial taxation in Tanganyika. Head tax was a dominant form of direct taxation with its burden being borne primarily by Africans. This article uses the colonial Njombe District of Tanganyika to explore the responses of the African taxpayers to the head tax. The available data indicates that colonial head tax policies and practices in Njombe elicited varied responses from Africans with covert forms forming the mainstay of …

Revisiting African Religion As An Academic Discipline In Africa: History And Prospects, Ivan B. Kivinge

Zamani: A Journal of African Historical Studies

Three main religious traditions—indigenous African beliefs and practices (African religion), Christianity and Islam—have dominated everyday life of communities in Africa today. Scholarship on religion indicates that only African religion originated in Africa— Christianity and Islam are foreign religions. Many Africans today have been active Christians and Muslims, who are sometimes being misleadingly taught that African religion is demonic and forms of paganism. This article employs historical and philosophical approaches to show how the study of African religion has navigated through various historical currents and resultant implications on the way the current generation views it. In the end, the article proposes …

Major Trends In Oral Historiography In Mainland Tanzania, 1960s To The Present: A Review Of Published Sources, Albertus K. Onyiego

Zamani: A Journal of African Historical Studies

This article examines the role of oral methodology in reconstructing historical knowledge in Mainland Tanzania over the last six decades. Although greater attention is paid to the period from the 1960s onwards, efforts have been made to illuminate on the use of oral methodology in the period before. The article is organised into four temporal sections, each representing a distinct phase of oral methodology. The first section explores the role of oral methodology before independence. It will be noticed that the gradual use of oral sources in the writing of history in Mainland Tanzania started way back during German and …

A Society For Professional Archaeologists In Tanzania: A Call For Action, Richard K. Bigambo

Zamani: A Journal of African Historical Studies

This essay discusses the need for an Archaeological Association of Tanzania and provides its general structure. It argues that the proposed association is essential for promoting the country’s development, heritage preservation and conservation, and promotion of archaeological studies. In addition to providing resources and support for research, training, and education, it would facilitate collaboration and networking, help protect and preserve Tanzania's cultural heritage, and increase public awareness and education about archaeology in Tanzania. The essay also discusses the development of archaeology in Tanzania and the history and contributions of archaeological associations worldwide. This structure for the proposed association would enable …

Review Of Water Brings No Harm: Management Knowledge And The Struggle For Waters Of Kilimanjaro, Maxmillian J. Chuhila

Zamani: A Journal of African Historical Studies

Water Brings No Harm is a key text that enables readers to understand the competing claims to resource control between government authorities and local communities on the ground. Scholarship on the relationship between local knowledge and expert knowledge in resource management and control suggests an asymmetrical relationship in which expert opinion assumes the primary responsibility.1 Bender contrasts traditional and imposed systems of resource ownership and management, arguing that there has been a struggle from both sides, as each side believes it has a rightful claim to ownership and management of water source.

Review Of Decolonising Sociology: An Introduction, Armstrong K. Matogwa

Zamani: A Journal of African Historical Studies

Decolonizing Sociology is one of the few works in sociology that makes critical assessment of the discipline. It is a kind of self-critique within the discipline that aims to reveal epistemic setbacks that have existed for decades. To arrive to the point, Meghji, has situated his thesis along decolonial sociology, which interrogates dominant sociological theories in the context of imperialism. By so doing, he makes three main arguments as follows; first, what is called sociology is colonial in nature as it is based on the ideas of the Western thinkers namely Marx, Durkheim and Weber which emerged and institutionalized during …

Community Perceptions On Ecotourism Development In Sebangau National Park, Central Kalimantan, Indonesia, Lisna Yulianti, Yun Pratiwi, Susan M. Cheyne, Andi Muhammad Kadhafi

Journal of Indonesian Tourism and Policy Studies

Sebangau National Park (SNP), Central Kalimantan, Indonesia, is home to the world’s largest contiguous population of orangutans (Pongo pygmaeus wurmbii) and a vast number of other fauna and flora. Ecotourism is a developing activity in this region and has the support of regional and national governments and possibilities for local, national and international tourism are extensive. In this case study we investigate perceptions of the local community in the village of Kereng Bangkirai to ecotourism through the following topics: 1) Ecotourism Development, 2) public tourist presence and visits, 3) how involved local people are in SNP management, 4) …

Legal Provisions And Administration Of Land Disputes In Kiteto District, Ca. 1970s – 2000s: The Missing Linkage, Juma Marmo

Zamani: A Journal of African Historical Studies

There have been a series of legal interventions on land use in the post-colonial Tanzania to create a good land administration and management in order to end land use conflicts. Scholarship on the legal aspect of land use indicates that legal interventions did not provide lasting solutions to land use conflicts because of their structural and systemic arrangements. In addition, existing scholarship has little focus on the linkage between law enforcement machinery, the peoples’ level of understanding on land laws, and the occurrence of land use conflicts. This paper discusses the violation of laws by peasants, pastoralists, and government officials …

Developing A Roadmap For Green Port In Timor-Leste, Emanuel Da Silva Maia

World Maritime University Dissertations

No abstract provided.

The Impact Of Disparities In Housing Cluster Development Regulations On Water Catchment Area Protection (Case Study: Bekasi City), Genta Aulia Ramadhan, Harsanto Nursadi

Cities and Urban Development Journal

Background: The development of housing clusters in urban areas is usually becoming a significant factor that affecting environmental conditions, especially in terms of protecting water catchment areas. This also happened in Bekasi City, the high demand for housing resulted in a rapid increase in the development of housing clusters which in some cases were not in line with environmental protection regulations.

Aims: This study aims to analyze the impact of regulatory gaps related to spatial planning and environmental management on the protection of water catchment areas in Bekasi City.

Methods: Using a case study approach, this study analyzes existing policies, …

Curug Cipamingkis Strategy As A Leading Travel Destination In Kesatuan Pemangkuan Hutan (Kph) Perhutani Bogor, Nurazahra Dwi Putri

Journal of Indonesian Tourism and Policy Studies

This research discusses the promotion strategy for the Cipamingkis Waterfall as a famous destination at the Kesatuan Pemangku Hutan (KPH) Perhutani Bogor with the aim of knowing how to promote Cipamingkis Waterfall in utilizing its tourism potential. This research was conducted when the author did an internship for 3 months. The research method used is descriptive qualitative with data collection techniques based on observations, interviews with managers, conducting direct surveys to destinations and literature studies or literature studies according to the theme. The results from the promotional strategy carried out by Cipamingkis Waterfall are quite good and must be maintained, …

Expenditure Control By Optimization Of Leftover Food In The Holiday Inn Hotel Kemayoran, Achmad Raihan Suryadi Ningrat

Journal of Indonesian Tourism and Policy Studies

The growth of tourism in Indonesia has positively impacted the hospitality sector, particularly in the kitchen department which is in charge of providing food and beverages to guests. Kitchen Hotel Holiday Inn Kemayoran wants to optimize the use of food scraps to control expenses without compromising food quality and hygiene. The results showed that there was a waste of food ingredients at the butcher and commissary in the hotel's main kitchen, such as chicken bones, shrimp shells, and vegetable ingredients. However, the leftovers can be processed with creative use into new dishes that reduce waste. This study provides theoretical benefits …

Health Literacy Of Unhealthy Diet Consumption In Thailand, Sitaporn Suriya, Buraskorn Torut

Makara Journal of Health Research

Background: The burden of noncommunicable diseases (NCDs) is increasing worldwide, including in Thailand. One risk factor for NCDs is an unhealthy diet. Thus, this study aimed to investigate the factors affecting the consumption of an unhealthy diet and determine the proactive policies that support factors inhibiting an unhealthy diet.

Methods: We investigated the factors affecting unhealthy diet consumption behavior by multiple linear regression analysis by surveying 970 Thai patients with early-stage NCD. In addition, we investigated appropriate policy proposals by conducting in-depth interviews with 20 key informants.

Results: Knowledge (−0.247, 95% confidence interval (CI) −0.285 to −0.210), …