A5051938558- Prenatal Screening and Diagnostics
- Biomedical Ethics and Regulation
- Ethics in Clinical Research
- Ethics and Legal Issues in Pediatric Healthcare
- Fetal and Pediatric Neurological Disorders
- Reproductive Health and Technologies
- BRCA gene mutations in cancer
- CRISPR and Genetic Engineering
- Ethics in medical practice
- Renal and related cancers
- Parvovirus B19 Infection Studies
- Cancer Genomics and Diagnostics
- Genetic and Clinical Aspects of Sex Determination and Chromosomal Abnormalities
- Family and Disability Support Research
- Autism Spectrum Disorder Research
- Genomic variations and chromosomal abnormalities
- LGBTQ Health, Identity, and Policy
- Disability Rights and Representation
- Uterine Myomas and Treatments
- Pharmaceutical industry and healthcare
- Tumors and Oncological Cases
- Patient Safety and Medication Errors
- COVID-19 Impact on Reproduction
- Race, Genetics, and Society
- Maternal and Perinatal Health Interventions
WinnMed
2015-2025
Mayo Clinic
2016-2025
Mayo Clinic in Florida
2016-2024
Mayo Clinic in Arizona
2016-2024
Jacksonville College
2022-2024
National Biomedical Research Ethics Council
2021-2023
Nemours Children’s Clinic
2023
Ethics and Public Policy Center
2013-2022
Case Western Reserve University
2019-2020
Massachusetts General Hospital
2020
Noninvasive prenatal genetic testing is becoming available worldwide--particularly in low- and middle-income countries--but practical ethical challenges must be overcome.
Despite considerable scientific progress and the evolution of regulatory pathways to ensure safety efficacy, US healthcare continues see increasing health disparities. This suggests that clinical translation in itself cannot be only measure its own success, especially when most marginalized patients, are neglected development implementation medical innovations. raises question whether a system is narrowly focused on technical achievement can meet moral obligations medicine public health. We...
Black breast and ovarian cancer patients are underrepresented in clinical trials disproportionate to the prevalence of these cancers females. Historically, lower enrollment has been attributed individualized factors, including medical mistrust, but more recently structural systemic racism, have received additional scrutiny. We interviewed women with a personal or family history understand their views experiences related research participation.Qualitative interviews were conducted via...
Abstract Objective To provide a preliminary assessment of obstetric healthcare provider opinions surrounding implementation cell‐free fetal DNA testing. Methods A 37‐question pilot survey was used to address questions around the translation and use non‐invasive prenatal testing using DNA. The distributed collected at Continuing Medical Education course on obstetrics gynecology. Results Of 62 respondents, 73% were female 87% held MD/DO degrees. Respondents generally agreed that patients want...
The goal of this study is to provide an ethical framework for clinicians and companies providing noninvasive prenatal testing using cell-free fetal DNA or whole cells.In collaboration with a National Institutes Health-supported research ethics consultation committee together feedback from interdisciplinary group clinicians, members industry, legal experts, genetic counselors, we developed set best practices the provision testing.Principal recommendations include amendment current informed...
Abstract Background Maternal health outcomes in the USA are far worse than peer nations. Increasing implementation research maternity care is critical to addressing quality gaps and unwarranted variations care. Implementation priorities have not yet been defined or well represented plans for maternal investments USA. Methods This descriptive study used a modified Delphi method solicit rank at intersection of science through two sequential web-based surveys. A purposeful, broad sample...
Abstract Noninvasive prenatal screening using cell‐free DNA, which analyzes placental DNA circulating in maternal blood to provide information about fetal chromosomal disorders early pregnancy and without risk the fetus, has been hailed as a potential “paradigm shift” genetic screening. Commercial provision of contributed rapid expansion tests included panels. The can include for sex chromosome anomalies, rare subchromosomal microdeletions aneuploidies, most recently, entire genome. benefits...
Abstract A 2003 survey revealed the scope of mothers' dissatisfaction with their postnatal support following a diagnosis Down syndrome (DS). Substantial proportions mothers reported that providers conveyed diagnoses pity, emphasized negative aspects DS, and neglected to provide adequate materials explaining DS. This study follows up on by assessing whether parents' experiences have improved. Four DS nonprofit organizations, which participated in original study, distributed mixed‐methods...
ABSTRACT Parents of children with Down syndrome have historically reported poor experiences receiving a prenatal diagnosis. In 2003 survey, mothers that their physicians pitied them, emphasized negative aspects syndrome, and encouraged them to terminate the pregnancy. This study assesses whether parents' perceptions since improved. Community‐based organizations had distributed original survey similar parents who child 2003. Compared continued report dissatisfaction medical care ( N = 60)....
Psychological safety is critical to early and continued engagement with healthcare providers, yet no studies have explored this concept in relationship cancer care. Black/African American ("Black") individuals experience disparities breast ovarian beyond what can be explained biologically. We factors influencing psychological among Black patients their family members. Socioeconomically diverse a personal diagnosis or history of and/or were invited complete semi-structured qualitative...
Abstract The ethics literature and professional guidelines call for extensive discussions prior to prescreening consent prenatal cell‐free DNA screening to, theoretically, allow patients make decisions that match their values goals of care. Most patients, however, actively avoid in‐depth moral deliberation when consenting then receive a screen‐negative result, suggesting an information‐heavy process is irrelevant average‐risk pregnancies. In addition, information‐based procedures are not...
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Increased prenatal diagnoses of sex chromosome aneuploidies (SCAs) amid limited knowledge their prognoses heighten the need to understand how families contend with implications an SCA. To explore experiences parents and individuals who received a genetic diagnosis SCA (excluding Turner syndrome), we conducted semistructured qualitative telephone interviews 43 participants affected by these conditions. Parents (n = 35) 8) expressed almost unanimous interest in more optimistic portrayals...