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Articles 4681 - 4710 of 63039
Full-Text Articles in Social and Behavioral Sciences
Sunset Provisions In The Local Tax Code: Perspectives Of City Leaders In Arkansas Cities Of The First Class, Sara R. Deuster
Sunset Provisions In The Local Tax Code: Perspectives Of City Leaders In Arkansas Cities Of The First Class, Sara R. Deuster
West Chester University Graduate Theses, Dissertations, and Final Projects
Unlike their federal and state counterparts, local governments do not have someone to pass the buck to when it comes to carrying out public programs and have a limited means to generate their own source revenue to sustain non-enterprise government services. Taxation is the primary means local governments rely on to generate such revenue. With the responsibility to provide services, maintain infrastructure, and accommodate growth, municipalities must capitalize on the taxing authority allowed by their respective state. The purpose of this study was to seek understanding on how city leaders in Arkansas cities of the first class view the use …
Mentoring In Support Of The Professional Development And Advancement Of Women As Executives In The Public Sector: An Interpretive Phenomenological Analysis, Holly M. Cirko
West Chester University Graduate Theses, Dissertations, and Final Projects
This study examined the lived experiences of women in municipal management to understand how mentoring influences their career development, leadership pathways, and perceptions of gendered dynamics in the workplace. Using an interpretative phenomenological analysis (IPA) approach, the research examined how participants made meaning of mentoring relationships, the support they received, and the organizational factors that influenced their access to developmental opportunities. Semi-structured interviews were conducted with women serving in executive roles across local government. Several major themes emerged: (1) mentoring as a critical resource for navigating gendered workplace challenges, (2) the role of informal and organic relationships in fostering confidence …
Quality Over Quantity: Doula Perspectives On Equity, Access, And Quality Of Care In Black Maternal Health Outcomes, Terry-Ann E. Lynch
Quality Over Quantity: Doula Perspectives On Equity, Access, And Quality Of Care In Black Maternal Health Outcomes, Terry-Ann E. Lynch
West Chester University Graduate Theses, Dissertations, and Final Projects
Black maternal mortality in the United States is a public health crisis. There are a plethora of reasons as to why maternal and fetal deaths disproportionately impact Black women. From a public health perspective, health disparities are an area of concern in marginalized communities, with Black maternal mortality being a risk factor. “According to the Centers for Disease Control and Prevention (CDC), in 2021, the maternal mortality rate for non-Hispanic Black (subsequently, Black) women was 69.9 deaths per 100,000 live births, 2.6 times the rate for non-Hispanic White (subsequently, White) women (26.6)” Maternal Mortality Rates in the United States, 2021” …
The Impact Of Age-Friendly Policy On New York State: How Executive Order-190 And Executive Order-23 Shape Community Development For All Ages, Trista Bercarich
The Impact Of Age-Friendly Policy On New York State: How Executive Order-190 And Executive Order-23 Shape Community Development For All Ages, Trista Bercarich
West Chester University Graduate Theses, Dissertations, and Final Projects
The demographic shift toward an aging population has created an urgent need for policies that promote inclusive, livable communities for all ages. This quantitative study examined New York State’s implementation of Age-Friendly policy through Executive Order 190 (2018) and Executive Order 23 (2022), which collectively advance the integration of health, accessibility and community participation across state and local systems. Guided by environmental gerontology and psychology, aging in place and successful aging frameworks, this research utilized an adapted version of the AARP Livable Communities Survey to assess residents’ perceptions of livability with the eight AARP domains. The cross-sectional online survey (n …
Gods Guns: Why Firearms And Firearm Culture Remain Sacred To Rural Americans, Thomas Westrick
Gods Guns: Why Firearms And Firearm Culture Remain Sacred To Rural Americans, Thomas Westrick
West Chester University Graduate Theses, Dissertations, and Final Projects
With ample evidence demonstrating a link between low levels of gun regulation and high levels of firearm fatalities, it seems intuitive that Americans would want to increase the level of firearm regulation to bring down the level of violence. However, the target population, white males living in rural areas of the State of Indiana and practicing the Christian Evangelical Protestant tradition, display high levels of resistance to new firearm regulation. This study sought to explore that resistance through the lens of the rural gun culture with an interpretivist qualitative design using reflexive thematic analysis to answer the research question: How …
School Infrastructure Procurement By Public–Private Partnership: In The Public Interest?, Leon Benade
School Infrastructure Procurement By Public–Private Partnership: In The Public Interest?, Leon Benade
Research outputs 2022 to 2026
The use of Public–Private Partnerships (PPPs) in the education sector to construct and maintain schools’ infrastructure is under-researched by Educational Studies specialists. This article presents an assay of the use of PPP to procure school facilities, notably in developed contexts, where PPP arrangements are typically a product of the neoliberal privatisation of education. PPP arrangements allow governments to contract private sector partners to finance, design and construct school facilities infrastructure in exchange for state payments. The evaluation is complemented by a critical analysis of the WA Schools Public Private Partnership Project and three published Australian-based case studies. This sets the …
Adults Drug Court Model's Review: A Case Study, Byron R. Titus
Adults Drug Court Model's Review: A Case Study, Byron R. Titus
Antioch University Dissertations & Theses
In 1989 Dade County, Florida, the so-called “War on Drugs” was in full swing. As a result, drug courts were created, acting as a diversion program for the many people subsequently caught up in this “war.” Since then, such “specialty courts” have proliferated across the planet. In some cases, local versions have been adopted to adjust to their unique population, culture, risk, and needs. This dissertation is a case study that reviews three Intensive Probation Supervision Programs (IPSP). These IPSPs identify a drug court in their state or country before it becomes a “certified drug court” (now more often referred …
Innovating Chaplaincy Education: Integrating Nonreligious Spiritual Care Interventions To Serve A Diverse Patient Population, Dianne Dragon
Innovating Chaplaincy Education: Integrating Nonreligious Spiritual Care Interventions To Serve A Diverse Patient Population, Dianne Dragon
Antioch University Dissertations & Theses
The transformation to the curriculum taught in chaplain training in Clinical Pastoral Education (CPE) will now address the spiritual needs of a more diverse, nonreligious, and interfaith population in the United States. Historically rooted in religious frameworks, CPE curricula are evolving to incorporate non-religious spiritual care interventions and promote research literacy among chaplains. This dissertation study uses descriptive analysis to present a study surveying CPE educators across over 300 U.S. based CPE centers to explore teaching practices and adaptation strategies. Findings reveal that integrating evidence-based methods and interdisciplinary collaboration is key to addressing inclusivity and professional competency in chaplaincy. By …
Black Birth Work As Radical Praxis: A Hermeneutic Phenomenological Inquiry Of Leadership Among Black Birth Workers, Lesa C. Clark
Black Birth Work As Radical Praxis: A Hermeneutic Phenomenological Inquiry Of Leadership Among Black Birth Workers, Lesa C. Clark
Antioch University Dissertations & Theses
This hermeneutic phenomenological study explores the leadership experiences of Black birth workers (BBWs), revealing critical insights into leadership dynamics within maternal healthcare. Through a theoretical framework integrating African feminism, Black feminism, and anti-racist feminism, the research examines how BBWs conceptualize and enact leadership through embodied, relational, and liberatory approaches. This study addresses a significant gap in leadership literature, particularly regarding generational knowledge and practices of BBWs, which remain understudied despite their vital role in Black maternal healthcare. This study reveals distinct leadership perspectives and methodologies through in-depth interviews with eight BBWs and a detailed interpretive analysis. The findings contribute to …
Ethical Imperatives For Rational Paternalism In Advisor-Client Relationships, Igor A. Zey
Ethical Imperatives For Rational Paternalism In Advisor-Client Relationships, Igor A. Zey
Antioch University Dissertations & Theses
This study seeks to understand the role of ethics and rational paternalism in the practice of financial advising. A significant amount of research examines the effects of rational paternalism on the governmental and institutional levels. Very little research has addressed the issues associated with rational paternalistic behavior by advisors toward their clients. Investopedia (2013) focuses on advisors’ ethics and moral responsibilities, underscoring the ethical standards clients should expect from their financial advisors. However, practically none of the literature examines the ethics, morals, and practical aspects of individual paternalism. In response, this study examines the concept of rational paternalism in advisor-client …
Complexity, Polycentricity, And Climate Change: An Embedded, Multi-Level Case Study Of A Climate Meta-Network, Timothy Staub
Complexity, Polycentricity, And Climate Change: An Embedded, Multi-Level Case Study Of A Climate Meta-Network, Timothy Staub
Antioch University Dissertations & Theses
The earth is in crisis, and without urgent, systemic, and collective global action to address the emerging threat of climate change, we will continue to see catastrophic events impacting humanity, threatening our very survival in many regions of the world. Temperatures will rise, ice shelves will melt, seas will rise, crops will fail, water scarcity from drought and new weather patterns will increase and spread, wildfires will accelerate, and food and water insecurity, violence, and the largest human migration in history will ensue. These climate crises will displace over 1.2 billion people by 2050 at a rate currently exceeding 21.5 …
Experiences Of Civilian Mental Health Providers Who Work With Military Clients: A Dissertation, Lydia P. Perry
Experiences Of Civilian Mental Health Providers Who Work With Military Clients: A Dissertation, Lydia P. Perry
Antioch University Dissertations & Theses
Using a qualitative survey design, this study sought to understand the experiences of fully civilian providers who had achieved self-perceived military cultural competence when working with military or veteran clients or their families. This study also sought a better understanding of what pathways fully civilian providers took in this process, as well as their perceptions of how to better equip other fully civilian providers for work with military and veteran clients and their families. The results of this study yield recommendations for changes in graduate training programs; for example, through more inclusion of the military as a culture in cross …
Embracing The Suck: Overcoming Moral Injury-Related Attachment Trauma Through Outdoor Adventure, Emerald D. Ralston
Embracing The Suck: Overcoming Moral Injury-Related Attachment Trauma Through Outdoor Adventure, Emerald D. Ralston
Antioch University Dissertations & Theses
Moral injury is increasingly recognized as a distinct and debilitating consequence of military service, arising when individuals engage in, witness, or are unable to prevent actions that transgress their deeply held moral beliefs. In this dissertation, I argue that this form of trauma can be experienced as an attachment rupture, particularly when the military—functioning as an institutional attachment figure—betrays the servicemember’s trust. Such experiences compromise internal working models (IWMs) of self, others, and the world, and may result in complex trauma symptoms, including dissociation, depersonalization, and profound relational disconnection. These injuries are frequently stored in the body, rendering traditional cognitive …
Caretaker Of Captors: The Experience Of Role Conflict Among State Correctional Officers, Camille M. Botticelli-Pohl
Caretaker Of Captors: The Experience Of Role Conflict Among State Correctional Officers, Camille M. Botticelli-Pohl
Antioch University Dissertations & Theses
A variety of policies at the national level over the last 70 years have resulted in the mass incarceration of various marginalized populations, inclusive of individuals with mental health problems or severe mental illness. Although Constitutional mandates require that psychology staff be available at all state and federal facilities, these providers spend a fraction of the time with incarcerated people than correctional officers do. Correctional officers seem to play an important, if often overlooked, supporting role in the management of the day-to-day lives of people in custody, including elements of their mental health care. They are also, theoretically, tasked with …
Journey To Well-Being: An Exploration Of Thrivership Post-Domestic Violence, Kader Gumus
Journey To Well-Being: An Exploration Of Thrivership Post-Domestic Violence, Kader Gumus
Antioch University Dissertations & Theses
Domestic violence profoundly affects multiple facets of a survivor’s life. While most existing literature on survivorship addresses the immediate aftermath of domestic violence, this study delves into the extended process following the trauma of abuse to attain “thrivership,” a new concept in the scholarly and practice literature that emphasizes enduring well-being and flourishing. This dissertation examines the journeys from surviving to thriving for 13 women who transformed themselves and their lives to achieve well-being after traumatic domestic violence. Bronfenbrenner’s ecological systems theory was applied to examine the multiple layers of environmental influences on an individual’s development, including the micro, meso, …
Multi-Risk Governance Of Solar Radiation Modification, Jonathan B. Wiener, Tyler Felgenhauer, Mark E. Borsuk
Multi-Risk Governance Of Solar Radiation Modification, Jonathan B. Wiener, Tyler Felgenhauer, Mark E. Borsuk
Faculty Scholarship
Solar radiation modification (SRM) presents important challenges to risk regulation and governance, arising from the array of multiple risks that SRM may influence. SRM would not simply reverse climate change, but could pose further ancillary impacts, depending on the method of SRM, such as stratospheric aerosol injection (SAI), marine cloud brightening (MCB), or a space-based planetary sunshade system (PSS). We identify multiple risks that SRM may influence, both biophysical and sociopolitical, to be compared to the multiple risks that may be affected by greenhouse gas (GHG) mitigation and climate adaptation. This multi-risk framework helps analysts and decision makers identify, evaluate, …
Explaining Mass Shooting Motivations: A Case Survey Analysis Of Us Mass Shootings (2006-2024), Isaiah H. Harris
Explaining Mass Shooting Motivations: A Case Survey Analysis Of Us Mass Shootings (2006-2024), Isaiah H. Harris
Electronic Theses & Dissertations (2024 - present)
Research on the motivations behind mass shootings remains inconclusive as these events often lack a singular or explicit cause. The motivations of mass shooters are complex, shaped by the interplay of psychological, social, and ideological factors. While some attacks are clearly driven by extremist beliefs, others appear to stem from less defined forces such as depravity or sadistic intent. Existing typologies, such as Langman’s (2009) analysis of school shooters, offer valuable insight but are limited in scope. This study expands upon previous research by examining U.S. mass shootings from 2006 to 2024 to determine whether such events are more frequently …
Lgbtqia+ Hate Crimes And State Non-Discrimination Policies: An Analysis, Jillian Jones
Lgbtqia+ Hate Crimes And State Non-Discrimination Policies: An Analysis, Jillian Jones
Midwest Social Sciences Journal
While LGBTQIA+ rights have been increasing in the United States for decades, many states do not have non-discrimination policies that protect individuals based on their gender identity and sexual orientation. This lack in protection leaves many LGBTQIA+ individuals vulnerable to experiencing discrimination and harassment, which could lead to hate crimes, cultivating an environment of passive tolerance rather than active resistance. Active resistance can be achieved through the passage of non-discrimination policies, as well as addressing minority stress that LGBTQIA+ individuals can be susceptible to when they are actively experiencing or anticipating discrimination and harassment. This research paper addresses whether the …
Pandemics And Partisanship: The Impact Of Political Identity On Public Health Responses, Andy Tuholski
Pandemics And Partisanship: The Impact Of Political Identity On Public Health Responses, Andy Tuholski
Midwest Social Sciences Journal
This literature review examines the intersection of political partisanship and public health responses during pandemics, with a focus on the COVID-19 pandemic in the United States. Historically, pandemics such as the Venetian plague (1575-1577) and the Great Plague of London (1665-1666) have elicited responses driven by socioeconomic and health factors. In contrast, the COVID-19 pandemic in the U.S. was distinctly shaped by pre-existing political affiliations, particularly between conservative and liberal factions. Applying Social Identity Theory (SIT), this review explores how group identity and partisanship influenced pandemic-related behaviors and attitudes. Empirical evidence indicates that Republican-leaning states experienced higher COVID-19 mortality rates, …
Urban Isolation In The Digital Age- Examining The Sociological Impact Of The Digital Divide On Civic Life In U.S. Cities, Delante Clark
Urban Isolation In The Digital Age- Examining The Sociological Impact Of The Digital Divide On Civic Life In U.S. Cities, Delante Clark
Graduate Scholarship and Creative Works
The digital divide remains a persistent barrier to civic participation and social inclusion in urban America, particularly in historically underserved communities. This mixed-methods study investigates how digital lack of access affects civic engagement, social capital, and community cohesion in U.S. cities, with a focus on Chicago’s South Side, Harlem New York, St. Louis, and Orlando. Drawing on quantitative data from recent surveys and qualitative insights from peer-reviewed literature, the research applies four sociological frameworks, Urban Sociology, Social Capital Theory, Critical Race Theory, and Symbolic Interactionism. These were used to examine the structural and interpretive aspects of digital isolation. Findings reveal …
Three Essays On Sustainability Economics, Hélène Flore Nguemgaing
Three Essays On Sustainability Economics, Hélène Flore Nguemgaing
Graduate Theses, Dissertations, and Problem Reports (ETD)
As global economies face increasing resource dependencies and supply chain challenges, it becomes essential to understand the vulnerabilities that threaten economic stability. This dissertation investigates three empirical issues in agribusiness and critical minerals using econometric models to estimate the following: 1) the impact of supply chain disruptions on stock market returns during COVID-19; 2) the extraction of rare earth elements from acid mine drainage treatment by investigating the impacts of ownership and legislation in West Virginia and Pennsylvania; 3) China-to�FOBb (Free-on-Board) price transmission in rare earth elements markets: a copula-based dynamic tail dependence analysis.
The first essay evaluates how events …
U.S. - China Technological Rivalry And The Future Of International Scientific Norms, Tatum Mosley
U.S. - China Technological Rivalry And The Future Of International Scientific Norms, Tatum Mosley
McNair Summer Research Program
This study is investigating how technological competition between the United States and China is reshaping international norms of scientific cooperation, with a particular focus on the semiconductor and computing sectors. Drawing on constructivist international relations theory, this research evaluates changes in norms of openness, academic exchange, multilateral governance, and ethical convergence. Using sector specific case studies, it compares the current U.S. - China dynamics to Cold War era science diplomacy. The analysis highlights growing fragmentation, norm divergence, and institutional strain as the global scientific order enters an era of techno-nationalist rivalry. It also considers whether new norms are emerging in …
Becoming A Leader “On The Job”: An Exploratory Study Examining How Internal Interim Leaders Build Their Leadership Capacity While Nonprofit Executive Directors Are On Sabbatical, Michelle Schneider
Becoming A Leader “On The Job”: An Exploratory Study Examining How Internal Interim Leaders Build Their Leadership Capacity While Nonprofit Executive Directors Are On Sabbatical, Michelle Schneider
Dissertations
Nonprofit organizations have long underinvested in leadership development, potentially hindering their ability to fulfill their missions effectively. This study examined the use of nonprofit organization sabbaticals that give executive directors time away while building the leadership capabilities of the interim leader. This research explored the on-the-job leadership development of six individuals who served as interim leaders in southern California nonprofit organizations during their executive directors' participation in a 3-month, foundation-funded sabbatical program.
In this study, data were collected through in-depth interviews with interim leaders. A formative influences timeline technique was employed to center the participant's voice rather than the interviewer's …
The International Risk Governance Council: Reflections On A 20-Year Experiment In Support Of Improved Risk Governance, M. Granger Morgan, Marie-Valentine Florin, Igor Linkov, Kenneth A. Oye, Arthur C. Petersen, Ortwin Renn, Jonathan B. Wiener, Lan Xue
The International Risk Governance Council: Reflections On A 20-Year Experiment In Support Of Improved Risk Governance, M. Granger Morgan, Marie-Valentine Florin, Igor Linkov, Kenneth A. Oye, Arthur C. Petersen, Ortwin Renn, Jonathan B. Wiener, Lan Xue
Faculty Scholarship
The International Risk Governance Council (IRGC) was a nonprofit foundation, based first as an independent, freestanding Swiss foundation in Geneva from 2003 to 2012, and then affiliated with École Polytechnique Fédérale de Lausanne in Lausanne from 2012 to 2023. IRGC's mission was to identify and improve the governance of emerging and systemic risks that have, or could have, impacts on human and environmental health, the economy and society, and overall sustainability. In this paper, we recount IRGC's history, describe its many reports, workshops, and conference activities (including tables referencing the many published products), and provide six brief case histories of …
Young Women In Cities: Urbanization And Gender-Biased Migration, Yumi Koh, Jing Li, Yifan Wu, Junjian Yi, Hanzhe Zhang
Young Women In Cities: Urbanization And Gender-Biased Migration, Yumi Koh, Jing Li, Yifan Wu, Junjian Yi, Hanzhe Zhang
Research Collection School Of Economics
Young women outnumber young men in cities in many countries during periods of economic growth and urbanization. This gender imbalance among young urbanites is more pronounced in larger cities. We use the gradual rollout of Special Economic Zones across China as a quasi-experiment to establish the causal impact of urbanization on gender-differentiated incentives to migrate. We highlight the role of the marriage market in increasing rural women’s chance of marrying and marrying up in urban areas during rapid urbanization.
Understanding How County Governments Strategically Plan And Strategize Technology: A Multiple Case Study In New York State, Battulga Buyannemekh
Understanding How County Governments Strategically Plan And Strategize Technology: A Multiple Case Study In New York State, Battulga Buyannemekh
Electronic Theses & Dissertations (2024 - present)
Embedded in the communities they serve, local governments increasingly leverage technology to modernize processes and operations to digitally transform public services and interactions with stakeholders to create and add value. Concomitantly, they must ensure that the use of technology does not threaten the rights and safety of individuals and organizations. Digital transformation requires alignment of technology with institutional, organizational, and environmental factors in addition to persistent innovations in technology, policy, and management. This balancing act hinges on governments’ capacity for strategic technology decision-making. As technology’s value propositions expand and local governments become more reliant on it, there is a growing …
Officers’ Perceptions Of Body-Worn Cameras: An Exploratory Study Of Small Police Departments In Upstate New York, Stefan A. Dela Riva
Officers’ Perceptions Of Body-Worn Cameras: An Exploratory Study Of Small Police Departments In Upstate New York, Stefan A. Dela Riva
Electronic Theses & Dissertations (2024 - present)
The aim of this exploratory study is to examine how police officers perceive the impact of body-worn cameras (BWCs) on their use of discretion when communicating with members of the public. In this context, “discretion” refers to an officer’s authority to make independent judgments while enforcing the law; deciding whether to issue a warning, make an arrest, or resolve an incident informally when legality permits. To understand officers’ opinions, a cross-sectional, quantitative online survey was distributed to various police departments and sheriff’s offices in upstate New York. Participants completed a series of Likert-style survey items addressing their general views on …
Presidential Regulation, Timothy Meyer, Ganesh Sitaraman
Presidential Regulation, Timothy Meyer, Ganesh Sitaraman
Faculty Scholarship
This Article documents and analyzes the rise of a new mode of economic governance: presidential regulation. Today, the President regularly bypasses not only Congress but also the executive branch’s own administrative agencies and directly imposes sweeping new economic regulations. President Biden, for instance, created new regulatory regimes governing producers of artificial-intelligence technologies, companies that trade in or hold the personal information of U.S. citizens, and companies that can increase the production of energy-efficient equipment and technology. During his first term, President Trump regulated the kinds of technologies that U.S. telecommunications companies can buy and sell, placed restrictions on the electrical …
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
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, …
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
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 …