Bioethics and Medical Ethics Commons^™

The Million Veteran Program 1990-1991 Gulf War Era Survey: An Evaluation Of Veteran Response, Characteristics, And Representativeness Of The Gulf War Era Veteran Population, Kelly M Harrington, Rachel Quaden, Lea Steele, Drew A Helmer, Elizabeth R Hauser, Sarah T Ahmed, Mihaela Aslan, Krishnan Radhakrishnan, Jacqueline Honerlaw, Xuan-Mai T Nguyen, Sumitra Muralidhar, John Concato, Kelly Cho, J Michael Gaziano, Stacey B Whitbourne, On Behalf Of The Va Million Veteran Program

Center for Medical Ethics and Health Policy Staff Publications

To address gaps in understanding the pathophysiology of Gulf War Illness (GWI), the VA Million Veteran Program (MVP) developed and implemented a survey to MVP enrollees who served in the U.S. military during the 1990–1991 Persian Gulf War (GW). Eligible Veterans were invited via mail to complete a survey assessing health conditions as well as GW-specific deployment characteristics and exposures. We evaluated the representativeness of this GW-era cohort relative to the broader population by comparing demographic, military, and health characteristics between respondents and non-respondents, as well as with all GW-era Veterans who have used Veterans Health Administration (VHA) services and …

Newborn Screening Analytes And Structural Birth Defects Among 27,000 Newborns, Philip J Lupo, Natalie P Archer, Rachel D Harris, Lisa K Marengo, Jeremy M Schraw, Adrienne T Hoyt, Susan Tanksley, Rachel Lee, Margaret Drummond-Borg, Debra Freedenberg, Priya B Shetty, A J Agopian, Charles Shumate, Sonja A Rasmussen, Peter H Langlois, Mark A Canfield

Center for Medical Ethics and Health Policy Staff Publications

Background: Emerging evidence suggests newborn screening analytes may yield insights into the etiologies of birth defects, yet no effort has evaluated associations between a range of newborn screening analytes and birth defects.

Methods: This population-based study pooled statewide data on birth defects, birth certificates, and newborn screening analytes from Texas occurring between January 1, 2007 and December 31, 2009. Associations between a panel of thirty-six newborn screening analytes, collected by the statewide Texas Newborn Screening Program, and the presence of a birth defect, defined as at least one of 39 birth defects diagnoses recorded by the Texas Birth Defects Registry, …

Choosing Your “Healthiest” Embryo After Dobbs: Polygenic Screening And Distinctive Challenges For Truth In Advertising And Informed Consent, Dov Fox, Sonia Suter, Meghna Mukherjee, Stacey Pereira, Gabriel Lázaro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Polygenic embryo screening ("PES") analyzes embryos for hundreds or thousands of genomic loci to generate risk scores that estimate genetic susceptibility to conditions and traits compared to the general population. The technology is commercially marketed directly to consumers. Companies focus mostly on medical conditions, sometimes in ways that oversell its advantages and efficacy, encouraging fertility patients to "choose your healthiest embryo" and "protect your future child from genetic risks." The advertising of PES trades on norms of children's health and good parenting and reinforces those normative ideals. While it is easy to assume PES will be constrained in practice by …

Victory Out Of Tragedy: Organ Donation, Ali Salim, Bryan A Cotton

Faculty, Staff and Student Publications

Major improvements in trauma care during the last decade have improved survival rates in the severely injured. The unintended consequence is the presentation of patients with non-survivable injuries in a time frame in which intervention is considered and often employed due to prognostic uncertainty. In light of this, discerning survivability in these patients remains increasingly problematic. Evidence-based cut-points of futility can guide early decisions for discontinuing aggressive treatment and use of precious resources in severely injured patients arriving in extremis.

"A Double-Edged Sword": A Brief History Of Genomic Data Governance And Genetic Researcher Perspectives On Data Sharing, Kayte Spector-Bagdady, Kerry A Ryan, Amy L Mcguire, Chris D Krenz, M Grace Trinidad, Kaitlyn Jaffe, Amanda Greene, J Denard Thomas, Madison Kent, Stephanie Morain, David Wilborn, J Scott Roberts

Center for Medical Ethics and Health Policy Staff Publications

As the federal government continues to expand upon and improve its data sharing policies over the past 20 years, complex challenges remain. Our interviews with U.S. academic genetic researchers (n=23) found that the burden, translation, industry limitations, and consent structure of data sharing remain major governance challenges.

The Determinants Of Nonprofit Hospital Ceo Compensation, Derek Jenkins, Marah N Short, Vivian Ho

Center for Medical Ethics and Health Policy Staff Publications

Hospital CEO salaries have grown quickly over the past two decades. We investigate correlates of rising nonprofit hospital CEO pay between 2012 and 2019 by merging compensation data from Candid's IRS 990 forms with hospital data from the National Academy for State Health Policy Hospital Cost Tool. Almost half of the measured increase in CEO compensation (44.5%) accrued to a "base case" CEO, who was leading a non-teaching hospital system or independent hospital with fewer than 100 beds that earned 0 profits and provided no charity care. Another 28.5% of the measured salary increase resulted from changes in the generosity …

Racial And Ethnic Disparities In Acuity Of Presentation Among Children With Newly Diagnosed Acute Leukemia, Lena E Winestone, Kelly D Getz, Yimei Li, Evanette Burrows, Michael E Scheurer, Vicky Tam, M Monica Gramatges, Jennifer J Wilkes, Tamara P Miller, Alix E Seif, Karen R Rabin, Brian T Fisher, Richard Aplenc

Center for Medical Ethics and Health Policy Staff Publications

We evaluated disparities in disease burden, organ dysfunction, vital signs, and timing of therapy in children newly presenting with acute leukemia. Among 899 patients with acute leukemia diagnosed at two large children's hospitals, a priori lab-based definitions of high disease burden, infection risk, renal dysfunction, and coagulopathy were applied to electronic health record data. Black patients with acute myeloid leukemia had increased prevalence of elevated white blood cell count and uric acid; Black patients with acute lymphoblastic leukemia demonstrated increased prevalence of coagulopathy. Black patients' presentation more frequently included multiple lab abnormalities consistent with advanced physiologic dysfunction. No differences were …

A Use Case Of Chatgpt: Summary Of An Expert Panel Discussion On Electronic Health Records And Implementation Science, Seppo T Rinne, Julian Brunner, Timothy P Hogan, Jacqueline M Ferguson, Drew A Helmer, Sylvia J Hysong, Grace Mckee, Amanda Midboe, Megan E Shepherd-Banigan, A Rani Elwy

Center for Medical Ethics and Health Policy Staff Publications

Objective: Artificial intelligence (AI) is revolutionizing healthcare, but less is known about how it may facilitate methodological innovations in research settings. In this manuscript, we describe a novel use of AI in summarizing and reporting qualitative data generated from an expert panel discussion about the role of electronic health records (EHRs) in implementation science.

Materials and methods: 15 implementation scientists participated in an hour-long expert panel discussion addressing how EHRs can support implementation strategies, measure implementation outcomes, and influence implementation science. Notes from the discussion were synthesized by ChatGPT (a large language model-LLM) to generate a manuscript summarizing the discussion, …

Clinical Characteristics Of Probands With Obsessive-Compulsive Disorder From Simplex And Multiplex Families, Monicke O Lima, Leonardo C Saraiva, Vanessa R Ramos, Melaine C Oliveira, Daniel L C Costa, Brazilian Research Consortium On Obsessive-Compulsive Spectrum Disorders, Thomas V Fernandez, James J Crowley, Eric A Storch, Roseli G Shavitt, Euripedes C Miguel, Carolina Cappi

Center for Medical Ethics and Health Policy Staff Publications

Genetic and non-genetic factors contribute to obsessive-compulsive disorder (OCD), with strong evidence of familial clustering. Genomic studies in psychiatry have used the concepts of families that are "simplex" (one affected) versus "multiplex" (multiple affected). Our study compares demographic and clinical data from OCD probands in simplex and multiplex families to uncover potential differences. We analyzed 994 OCD probands (501 multiplex, 493 simplex) from the Brazilian Research Consortium on Obsessive-Compulsive Spectrum Disorders (C-TOC). Clinicians administered the Structured Clinical Interview for DSM-IV (SCID-IV) to diagnose, Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) to assess severity, and Dimensional Yale-Brown Obsessive-Compulsive Scale (DY-BOCS) to assess symptom dimensionality. …

Study Protocol For Measuring Stigmatization In Persistent Tic Disorders: Development And Validation Of The Tourette Discrimination-Stigmatization Scale, Jaclyn M Martindale, Victor M Ringheanu, Kelly A Pring, Sandra Norona, Kimberly Wiseman, Roy E Strowd, Leah Chapman, Joseph Rigdon, Stephen R Rapp, Eric A Storch, Edward Ip, Jonathan W Mink

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Persistent Tic Disorders such as Tourette Syndrome are common neurodevelopmental disorders that are highly stigmatized. Many individuals with Persistent Tic Disorders experience peer rejection, loneliness, and self-stigma. Experiencing stigmatization during childhood can influence the persistence of moderate-to-severe tics later in life. Additionally, these factors have been associated with increased suicidal ideation, suicide attempts, and psychiatric symptom severity. There is a need for interventions to reduce stigma and stigmatization in Persistent Tic Disorders. Before developing cost-effective interventions to mitigate stigma's profound downstream health impacts, a reliable measure of stigmatization must be created. The overarching goal of this research is to …

Public Perspectives On Investigative Genetic Genealogy: Findings From A National Focus Group Study, Jacklyn Dahlquist, Jill O Robinson, Amira Daoud, Whitney Bash-Brooks, Amy L Mcguire, Christi J Guerrini, Stephanie M Fullerton

Center for Medical Ethics and Health Policy Staff Publications

Background: Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes.

Methods: We conducted eight focus groups with members of the public (N = 72), sampled from four geographically diverse US regions, …

Obsessive-Compulsive Disorder Among Individuals Of Hispanic And Latin American Ancestry: Cultural Considerations For Assessment And Psychotherapy, Olivia J Morris, Andrew D Wiese, Caitlin M Pinciotti, Rosa Pacheco, Mayra C Martinez Mallen, Ethan J Schweissing, Keaton J Soileau, Latin American Trans-Ancestry Initiative For Ocd Genomics (Latino), Brazilian Obsessive-Compulsive Spectrum Work Group (Gttoc), James J Crowley, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Research specific to obsessive-compulsive disorder (OCD) among individuals of Hispanic and Latin American (H/L) ancestry is limited, as are culturally relevant assessment and treatment recommendations. This article discusses the implications of underrepresentation of H/L populations in OCD research and emphasizes the need to consider issues related to assessment, treatment, and structural barriers that hinder delivery of culturally appropriate first-line psychotherapy. Recommendations for assessment and treatment are provided to aid clinicians in distinguishing culturally normative thoughts and behaviors from OCD, as well as to inform the implementation of psychotherapeutic interventions with cultural humility. This manuscript offers recommendations for future research to …

Interrogating The Value Of Return Of Results For Diverse Populations: Perspectives From Precision Medicine Researchers, Caitlin E Mcmahon, Nicole Foti, Melanie Jeske, William R Britton, Stephanie M Fullerton, Janet K Shim, Sandra Soo-Jin Lee

Center for Medical Ethics and Health Policy Staff Publications

Background: Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the "duty to report" from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by providing investigator and researcher perspectives on and questions about the assumed value of ROR in PMR.

Methods: Semi-structured interviews with a …

Development Of A Multi-Level/Multi-Modal Intervention For Health Care Transition Preparation, Beth H Garland, Mary Majumder, Constance M Wiemann, Blanca Sanchez-Fournier, Jordyn Babla, Albert C Hergenroeder

Center for Medical Ethics and Health Policy Staff Publications

Aims: Health care transition (HCT) to adult care and young adult disease self-management is a multi-step process involving three major stakeholders - the adolescent, the caregiver, and the provider. Preparation gaps exist within each of these stakeholder groups. This paper presents the development of the Intervention to Promote Autonomy and Competence in Transition-aged Youth (IPACT), a multi-level (adolescent, caregiver, provider), multi-modal (interactive skill building sessions, educational materials, videos) intervention to address gaps in all three stakeholder groups simultaneously and help support achieving the three core elements of HCT planning.

Methods: Eight processes were utilized to develop the IPACT intervention, including …

Bridging The Gap: Transforming Primary Care Through The Artificial Intelligence And Machine Learning For Primary Care (Aim-Pc) Curriculum, Winston Liaw, Brian Hischier, Cornelius A James, Ioannis Kakadiaris, Jacqueline K Kueper, Vasiliki Rahimzadeh

Center for Medical Ethics and Health Policy Staff Publications

No abstract provided.

Benefits Of Sharing Neurophysiology Data From The Brain Initiative Research Opportunities In Humans Consortium, Vasiliki Rahimzadeh, Kathryn Maxson Jones, Mary A Majumder, Michael J Kahana, Ueli Rutishauser, Ziv M Williams, Sydney S Cash, Angelique C Paulk, Jie Zheng, Michael S Beauchamp, Jennifer L Collinger, Nader Pouratian, Amy L Mcguire, Sameer A Sheth

Center for Medical Ethics and Health Policy Staff Publications

Sharing human brain data can yield scientific benefits, but because of various disincentives, only a fraction of these data is currently shared. We profile three successful data-sharing experiences from the NIH BRAIN Initiative Research Opportunities in Humans (ROH) Consortium and demonstrate benefits to data producers and to users.

Acute And Chronic Kidney Injury During Therapy For Pediatric Acute Leukemia: A Report From The Leukemia Electronic Abstraction Of Records Network (Learn), Wendy Hsiao, Yimei Li, Kelly Getz, Lusha Cao, Edward Krause, Mark Ramos, Judy Lee, Maria Monica Gramatges, Karen R Rabin, Michael E Scheurer, Richard Aplenc, Michelle Denburg, Tamara P Miller

Center for Medical Ethics and Health Policy Staff Publications

Children with acute leukemia are at increased risk of kidney injury. Using electronic health record data from three centers between 2010 and 2018, this study retrospectively described acute kidney injury (AKI) and chronic kidney disease (CKD) prevalence in children with acute lymphoblastic or myeloid leukemia (ALL, AML) using Common Terminology Criteria for Adverse Events (CTCAE) and Kidney Disease Improving Global Outcomes (KDIGO) definitions. AKI during therapy was 25% (ALL) and 32% (AML) using CTCAE, versus 84% (ALL) and 74% (AML) using KDIGO. CKD prevalence was low and Grade 1/Stage 2. Further investigation is needed to optimally define kidney injury in …

Depressive Symptoms In Autistic Youth With Anxiety Disorders, Rebecca L Greenberg, Andrew G Guzick, Sophie C Schneider, Saira A Weinzimmer, Minjee Kook, Amanda B Perozo Garcia, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Objective: Anxiety and depression often coexist in youth and share overlapping symptomatology; however, little is known about the comorbidity of anxiety and depression in autistic youth. This study explores (1) the frequency of depressive symptoms among autistic children with clinically significant anxiety, (2) clinical variables that may be associated with elevated depressive symptoms, and (3) whether pretreatment depressive symptoms predict cognitive behavioral therapy (CBT) outcomes for anxiety.

Method: Children aged 7 to 13 years (N = 87) and their parents participated in a randomized controlled trial comparing 2 versions of a parent-led, telehealth-delivered CBT program. Parents and children completed a …

Idiographic Coping Outcomes In Youth With Autism Spectrum Disorder And Co-Occurring Anxiety: Results From The Taasd Study, Lesley A Norris, Jonathan C Rabner, Eric A Storch, Jeffrey J Wood, Connor Kerns, Adam B Lewin, Brent J Small, Philip C Kendall

Center for Medical Ethics and Health Policy Staff Publications

Versions of cognitive behavioral therapy (Coping Cat, CC; Behavioral Interventions for Anxiety in Children with Autism, BIACA) have shown efficacy in treating anxiety among youth with autism spectrum disorder. Measures of efficacy have been primarily nomothetic symptom severity assessments. The current study examined idiographic coping outcomes in the Treatment of Anxiety in Autism Spectrum Disorder study (N = 167). Longitudinal changes in coping with situations individualized to youth fears (Coping Questionnaire) were examined across CC, BIACA and treatment as usual (TAU) in a series of multilevel models. CC and BIACA produced significantly greater improvements than TAU in caregiver-reported coping. Youth …

Responding Well To Spiritual Worldviews: A Taxonomy For Clinical Ethicists, Trevor M Bibler

Center for Medical Ethics and Health Policy Staff Publications

Every clinical ethics consultant, no matter their own spirituality, will meet patients, families, and healthcare professionals whose spiritualities anchor their moral worldviews. How might ethicists respond to those who rely on spirituality when making medical decisions? And further, should ethicists incorporate their own spiritual commitments into their clinical analyses and recommendations? These questions prompt reflection on foundational issues in the philosophy of medicine, political and moral theory, and methods of proper clinical ethics consultation. Rather than attempting to offer definitive answers to these questions, this essay prompts readers to consider their own answers to these questions. Specifically, it offers a …

Pediatric Hiv+ Kaposi Sarcoma Exhibits Clinical, Virological, And Molecular Features Different From The Adult Disease, Carolina Caro-Vegas, Alice Peng, Angelica Juarez, Allison Silverstein, William Kamiyango, Jimmy Villiera, Casey L Mcatee, Rizine Mzikamanda, Tamiwe Tomoka, Erin C Peckham-Gregory, Razia Moorad, Carrie L Kovarik, Liane R Campbell, Parth S Mehta, Peter N Kazembe, Carl E Allen, Michael E Scheurer, Nmazuo W Ozuah, Dirk P Dittmer, Nader Kim El-Mallawany

Center for Medical Ethics and Health Policy Staff Publications

BACKGROUND

Kaposi sarcoma (KS) is among the most common childhood cancers in Eastern and Central Africa. Pediatric KS has a distinctive clinical presentation compared with adult KS, which includes a tendency for primary lymph node involvement, a considerable proportion of patients lacking cutaneous lesions, and a potential for fulminant disease. The molecular mechanisms or correlates for these disease features are unknown.

METHODS

This was a cross-sectional study. All cases were confirmed by IHC for KS-associated herpesvirus (KSHV) LANA protein. Baseline blood samples were profiled for HIV and KSHV genome copy numbers by qPCR and secreted cytokines by ELISA. Biopsies were …

A Novel Tailed Primer Nucleic Acid Test For Detection Of Hpv 16, 18 And 45 Dna At The Point Of Care, Megan M Chang, Ariel Ma, Emilie Newsham Novak, Maria Barra, Kathryn A Kundrod, Jane Richards Montealegre, Michael E Scheurer, Philip E Castle, Kathleen Schmeler, Rebecca Richards-Kortum

Center for Medical Ethics and Health Policy Staff Publications

Cervical cancer is a leading cause of death for women in low-resource settings despite being preventable through human papillomavirus (HPV) vaccination, early detection, and treatment of precancerous lesions. The World Health Organization recommends high-risk HPV (hrHPV) as the preferred cervical cancer screening strategy, which is difficult to implement in low-resource settings due to high costs, reliance on centralized laboratory infrastructure, and long sample-to-answer times. To help meet the need for rapid, low-cost, and decentralized cervical cancer screening, we developed tailed primer isothermal amplification and lateral flow detection assays for HPV16, HPV18, and HPV45 DNA. We translated these assays into a …

Comparison Of Hospital Online Price And Telephone Price For Shoppable Services, Merina Thomas, James Flaherty, Jiefei Wang, Morgan Henderson, Vivian Ho, Mark Cuban, Peter Cram

Center for Medical Ethics and Health Policy Staff Publications

Importance: US hospitals are required to publicly post their prices for specified shoppable services online. However, the extent to which a hospital's prices posted online correlate with the prices they give to a telephone caller is unknown.

Objective: To compare hospitals' online cash prices for vaginal childbirth and brain magnetic resonance imaging (MRI) with prices offered to secret shopper callers requesting price estimates by telephone.

Design, setting, and participants: This cross-sectional study included cash online prices from each hospital's website for vaginal childbirth and brain MRI collected from representative US hospitals between August and October 2022. Thereafter, again between August …

The Ethical Data Practices Framework And Its Implications For Data Privacy Relations Between The United States And The European Union, Vasiliki Rahimzadeh

Center for Medical Ethics and Health Policy Staff Publications

No abstract provided.

Factors Associated With Internalizing And Externalizing Symptoms In A Clinical Sample Of Youth With Misophonia, Gabrielle M Armstrong, Rebecca L Greenberg, Orri Smárason, Renee M Frederick, Andrew G Guzick, Sophie C Schneider, Samuel D Spencer, Matti Cervin, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Misophonia is an often chronic condition characterized by strong, unpleasant emotional reactions when exposed to specific auditory or visual triggers. While not currently defined within existing classification systems, and not clearly fitting within the framework of extant psychiatric conditions, misophonia has historically been studied most frequently within the context of obsessive-compulsive and related disorders. Internalizing and externalizing psychiatric symptoms are common in misophonia, but specific factors that confer risk for these symptoms remain unknown. The present cross-sectional study examined whether sensory sensitivity and cognitive emotion regulation facets are associated with co-occurring internalizing and externalizing symptoms in 102 youth with misophonia …

Hope And Optimism In Pediatric Deep Brain Stimulation: Key Stakeholder Perspectives, Natalie Dorfman, Lilly Snellman, Ynez Kerley, Kristin Kostick-Quenet, Gabriel Lazaro-Munoz, Eric A Storch, Jennifer Blumenthal-Barby

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Deep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in "last resort" intervention scenarios such as DBS for refractory conditions.

Objective: This study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystonia and provides insights for clinicians seeking to implement effective communication strategies.

Materials and methods: Semi-structured interviews with clinicians (n = 29) and caregivers (n = 44) were conducted, …

Rural-Urban Disparities In Video Telehealth Use During Rapid Mental Health Care Virtualization Among American Indian/Alaska Native Veterans, Isabelle S Kusters, Amber B Amspoker, Kristen Frosio, Stephanie C Day, Giselle Day, Anthony Ecker, Julianna Hogan, Jan A Lindsay, Jay Shore

Center for Medical Ethics and Health Policy Staff Publications

Importance: American Indian/Alaska Native veterans experience a high risk for health inequities, including mental health (MH) care access. Rapid virtualization of MH care in response to the COVID-19 pandemic facilitated care continuity across the Veterans Health Administration (VHA), but the association between virtualization of care and health inequities among American Indian/Alaska Native veterans is unknown.

Objective: To examine differences in video telehealth (VTH) use for MH care between American Indian/Alaska Native and non-American Indian/Alaska Native veterans by rurality and urbanicity.

Design, setting, and participants: In this cohort study, VHA administrative data on VTH use among a veteran cohort that received …

Spanish-Language Communication Of Covid-19 Information Across Us Local Health Department Websites, Isabelle S Kusters, Amanda M Gutierrez, Julianna M Dean, Mark Sommer, Anna Klyueva

Center for Medical Ethics and Health Policy Staff Publications

The COVID-19 pandemic has brought new urgency to a longstanding problem: the US health system is not well-equipped to accommodate the country's large limited English proficient (LEP) population in times of national emergency. We examined the landscape of Spanish-language COVID-19 website information compared to information in English provided by health departments of the top 10 cities by population in the USA. For each city, coders evaluated three score measures (amount of information, presentation quality, and ease of navigation) for six content types (general information, symptoms, testing, prevention, vaccines, and live statistics) across six delivery modes (print resources, website text, videos, …

Researching The Future: Scenarios To Explore The Future Of Human Genome Editing, Cynthia Selin, Lauren Lambert, Stephanie Morain, John P Nelson, Dorit Barlevy, Mahmud Farooque, Haley Manley, Christopher T Scott

Center for Medical Ethics and Health Policy Staff Publications

Background: Forward-looking, democratically oriented governance is needed to ensure that human genome editing serves rather than undercuts public values. Scientific, policy, and ethics communities have recognized this necessity but have demonstrated limited understanding of how to fulfill it. The field of bioethics has long attempted to grapple with the unintended consequences of emerging technologies, but too often such foresight has lacked adequate scientific grounding, overemphasized regulation to the exclusion of examining underlying values, and failed to adequately engage the public.

Methods: This research investigates the application of scenario planning, a tool developed in the high-stakes, uncertainty-ridden world of corporate strategy, …

Cell-Based Noninvasive Prenatal Testing (Cbnipt)-A Review On The Current Developments And Future Prospects, Mohamad Ali Maktabi, Liesbeth Vossaert, Ignatia B Van Den Veyver

Center for Medical Ethics and Health Policy Staff Publications

Considering the diagnostic limitations of cfDNA-based noninvasive prenatal testing (NIPT), scientists have long been interested in isolating and analyzing rare intact fetal and trophoblast cells from maternal blood or endocervical samples to diagnose fetal genetic conditions. These cells may be scarce and difficult to isolate, but they are a direct source of pure fetal genetic material. In this review, we summarize the history of cell-based NIPT, present an updated review on its current developments, evaluate its genetic diagnostic potential, and discuss its future prospects for clinical use.