A5044093264- BRCA gene mutations in cancer
- Ethics in Clinical Research
- Genomics and Rare Diseases
- Biomedical Ethics and Regulation
- CRISPR and Genetic Engineering
- Ethics and Legal Issues in Pediatric Healthcare
- Ethics in medical practice
- Cancer Genomics and Diagnostics
- Higher Education and Employability
- Innovations in Medical Education
- Genetic factors in colorectal cancer
- Genetic Associations and Epidemiology
- Patient-Provider Communication in Healthcare
- Sex and Gender in Healthcare
- Biomedical and Engineering Education
- Intellectual Property and Patents
- Biotechnology and Related Fields
- Nutrition, Genetics, and Disease
- Genomic variations and chromosomal abnormalities
- Medical History and Research
- Innovation and Socioeconomic Development
- Health and Medical Research Impacts
- Animal testing and alternatives
- Health Systems, Economic Evaluations, Quality of Life
- Prenatal Screening and Diagnostics
University of North Carolina at Chapel Hill
2017-2025
University of North Carolina Health Care
2020-2021
University of Puerto Rico at Carolina
2021
Communities In Schools of Orange County
2021
Case Western Reserve University
2016
This paper analyses the activities of five organizations shaping debate over global governance genome editing in order to assess current approaches public engagement (PE). We compare recommendations each group with its own practices. All recommend broad general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups citizen deliberation-driven that feature bidirectional consultation local citizens, as well hybrid combine elements...
Ensuring equitable access to health care is a widely agreed-upon goal in medicine, yet multidimensional concept that difficult measure. Although frameworks exist evaluate generally, the of "access genomic medicine" largely unexplored and clear framework for studying addressing major dimensions lacking.
Background: Since the National Institutes of Health (NIH) Revitalization Act 1993, focus on equitable inclusion women in clinical research has been ongoing. NIH's 2015 sex as a biological variable (SABV) policy aims to transform design, analysis, and reporting preclinical sphere by including male female organisms vertebrate animal well human studies. However, questions remain regarding how researchers members oversight committees perceive value need SABV policy. Materials Methods: Based 62...
The right to enjoy benefits of scientific progress and its applications (REBSPA) is under debate. efforts a U.N. Expert, the CESCR, an AAAS coalition, scholars have shed light on raised awareness this right. Deserving more attention children’s REBSPA. Young people stand gain significantly from REBSPA, yet little known about how may impact interests. This article examines young people’s REBSPA in context international agreements research Indicators reveal differences across within countries,...
Background: In 2015, the National Institutes of Health (NIH) established a policy on sex as biological variable (SABV) in an effort to address overrepresentation men and male animals biomedical research lack attention sex-based responses medical treatments. However, questions remain regarding how U.S. researchers perceive impact SABV their own translational science more broadly. Materials Methods: A national survey scientists who use vertebrate was conducted. Respondents were asked they...
Background The ethical use both of human and non-human animals in research is predicated on the assumption that it a high quality its projected benefits are more significant than risks harms imposed subjects. Yet questions remain about whether how IRBs IACUCs should consider scientific value proposed studies.Methods We draw upon 45 interviews with IRB IACUC members researchers oversight experience their perceptions own roles reviewing protocols. Interview transcripts were memoed to highlight...
The South East Asia Research Collaboration in HIV (SEARCH) RV411 clinical trial Thailand was a systematic investigation of analytic treatment interruption (ATI) individuals diagnosed and treated since Fiebig stage I acute infection. Here, we explore decision-making processes perceptions participation phase that raised important ethical considerations, to identify potential areas improvement this relatively new field research. Similar considerations apply other trials, especially those...
Abstract Introduction: Implementation of genome-scale sequencing in clinical care has significant challenges: the technology is highly dimensional with many kinds potential results, results interpretation and delivery require expertise coordination across multiple medical specialties, utility may be uncertain, there broader familial or societal implications beyond individual participant. Transdisciplinary consortia collaborative team science are well poised to address these challenges....
Purpose To investigate patient reactions to and understanding of secondary genomic findings with limited no medical actionability (LMA-SFs) from diagnostic genome sequencing.
Introduction: As genomic technologies and therapies advance, paired with increasing clinical knowledge declining sequencing cost, the scope of DNA-based preventive pediatric screening is expected to expand. Age-Based Genomic Screening (ABGS) an approach that proposes integrate targeted for highly actionable genetic conditions into routine well-child care at specific time points aligned optimal interventions. Prior implementation ABGS in primary care, however, it necessary investigate factors...
Traditional distinctions between treatment and enhancement goals for human genome editing (HGE) have animated oversight considerations, yet these categories been complicated by the addition of prevention as a possible target HGE applications. To assess role three might play in continued governance efforts, we report on interviews with scientists group members. While some accepted traditional rejected latter unacceptable, others argued that concept is largely irrelevant or not morally...
<b><i>Background:</i></b> Online study recruitment is increasingly popular, but we know little about the decision making that goes into joining studies in this manner. In GeneScreen, a genomic screening utilized online education and consent, investigated participants' perceived ease when deciding to join their understanding of key features. <b><i>Methods:</i></b> Individuals were recruited via mailings directed them website where they could...
New gene-editing tools challenge conventional policy proscriptions of research aimed at either human germline gene editing or enhancement by potentially lowering technical barriers to both kinds intervention. Some recent reports have begun take up the prospect editing, but most experts are in broad agreement that should prioritize medical applications over attempts enhance traits. However, there is little consensus about what counts as this context, how deal with issues it flags. Moreover,...
Aim: Maximizing the utility and equity of genomic sequencing integration in clinical care requires engaging patients, their families, communities. The NCGENES 2 study explores impact engagement between clinicians caregivers children with undiagnosed conditions context a diagnostic study. Methods: A Community Consult Team (CCT) diverse parents advocates for genetic and/or neurodevelopmental was formed. Results: Early consistent CCT resulted adaptations to protocol materials relevant this...
The ethical skills fundamental to medical practice encompass a large portion of the Accreditation Council for Graduate Medical Education (ACGME) professionalism milestones. Yet many practices are difficult reduce milestone frameworks given variety traditions moral reasoning that clinician-trainees and their colleagues might properly employ.We developed an observed standardized clinical examination (OSCE) simulation with patients assess captured in milestones pediatrics. OSCE included four...
ABSTRACT Over the past 30 years, progress has been made in increasing women's representation clinical research. However, women continue to be underrepresented phase I trials—those trials that test safety and tolerability of investigational drugs, often on healthy individuals. As sex‐based differences adverse drug reactions are linked dose, pivotal information is insufficiently—and inequitably—captured for females. Yet there little attention how investigators those charged with overseeing...