Informal Prenatal Genetic Screening Education: What can you learn from Google and YouTube?

Introduction: The goal of this paper is to explore what online education and decision support tools are freely available to patients about prenatal screening.

Materials And Methods: We 1) conducted an environmental scan using Google Trends to identify and evaluate prenatal screening search terms, 2) created a list of websites and YouTube videos that would be easily accessed by a searcher and 3) characterized the information within those websites and videos, including an examination of their qualities as a decision support tool and a readability analysis.

Results: Fifty websites, containing 62 unique educational resources, and 39 YouTube videos were analyzed.

Creating a postmortem examination decision aid: Suggestions from bereaved parents of a stillborn.

Objectives: To understand the postmortem decision-making needs and preferences of parents of a stillborn.

Methods: A qualitative content analysis was conducted. Patients who received stillbirth care at the University of Utah in the last 5 years, were 18 years of age or older, and English speakers, were invited to participate via an email and follow-up phone call.

Environmental exposures in machine learning and data mining approaches to diabetes etiology: A scoping review.

Background: Environmental exposures are implicated in diabetes etiology, but are poorly understood due to disease heterogeneity, complexity of exposures, and analytical challenges. Machine learning and data mining are artificial intelligence methods that can address these limitations. Despite their increasing adoption in etiology and prediction of diabetes research, the types of methods and exposures analyzed have not been thoroughly reviewed.

Understanding the experiences and perspectives of prenatal screening among a diverse cohort.

Introduction: Rapid advances in prenatal genetic screening technology make it difficult for providers to deliver adequate prenatal counseling. The aim of this study was to understand how prenatal screening educational approaches can meet the needs of patients.

Methods: Qualitative content analysis was conducted on a diverse population who were interviewed to explore their perceived experiences and preferences for prenatal screening educational delivery.

Evaluating visual imagery for participant understanding of research concepts in genomics research.

Informed consent is crucial for participant understanding, engagement, and partnering for research. However, current written informed consents have significant limitations, particularly for complex topics such as genomics and biobanking. Our goal was to identify how participants visually conceptualize terminology used in genomics and biobanking research studies, which might provide a novel approach for informed consent.

Toward informatics-enabled preparedness for natural hazards to minimize health impacts of climate change.

Natural hazards (NHs) associated with climate change have been increasing in frequency and intensity. These acute events impact humans both directly and through their effects on social and environmental determinants of health. Rather than relying on a fully reactive incident response disposition, it is crucial to ramp up preparedness initiatives for worsening case scenarios.

Social Determinants of Health Factors for Gene-Environment COVID-19 Research: Challenges and Opportunities.

The characteristics of a person's health status are often guided by how they live, grow, learn, their genetics, as well as their access to health care. Yet, all too often, studies examining the relationship between social determinants of health (behavioral, sociocultural, and physical environmental factors), the role of demographics, and health outcomes poorly represent these relationships, leading to misinterpretations, limited study reproducibility, and datasets with limited representativeness and secondary research use capacity. This is a profound hurdle in what questions can or cannot be rigorously studied about COVID-19.

K-means cluster analysis of cooperative effects of CO, NO, O, PM, PM, and SO on incidence of type 2 diabetes mellitus in the US.

Air pollution (AP) has been shown to increase the risk of type 2 diabetes mellitus, as well as other cardiometabolic diseases. AP is characterized by a complex mixture of components for which the composition depends on sources and metrological factors. The US Environmental Protection Agency (EPA) monitors and regulates certain components of air pollution known to have negative consequences for human health.

Clinical, social, and policy factors in COVID-19 cases and deaths: methodological considerations for feature selection and modeling in county-level analyses.

Background: There is a need to evaluate how the choice of time interval contributes to the lack of consistency of SDoH variables that appear as important to COVID-19 disease burden within an analysis for both case counts and death counts.

Methods: This study identified SDoH variables associated with U.S county-level COVID-19 cumulative case and death incidence for six different periods: the first 30, 60, 90, 120, 150, and 180 days since each county had COVID-19 one case per 10,000 residents.

The limited use of US residual newborn screening dried bloodspots for health disparity research.

Purpose: State-run newborn screening programs screen nearly all babies born in the United States at the time of delivery. After newborn screening has been completed, some states store the residual dried bloodspots. It is unknown how they have been used to address health disparities-related research.

Patient perspectives and experiences with fertilization and genetic testing options.

Objective: Decision-making and patient experiences with embryo selection during fertilization often include genetic testing options. The purpose of this study was to gain insight about the experiences and perspectives of women using fertilization and genetic technologies.

Methods: Interviews ( = 37) were conducted among female patients who had undergone fertilization, underwent expanded carrier screening, and were offered pre-implantation genetic testing for aneuploidy between July 2016 and July 2017.

Comparison of Video, App, and Standard Consent Processes on Decision-Making for Biospecimen Research: A Randomized Controlled Trial.

Obtaining informed consent for bloodspot research from newborn screening is particularly challenging due to the hectic environment of the postnatal period and the relatively abstract nature of future, unspecified research on the biospecimens. A randomized controlled trial was conducted in three Michigan hospitals to compare two different consent processes (video and interactive tablet "app") with standard brochure-based consent in the Michigan BioTrust for Health. Results indicated higher knowledge scores for the video and app groups as well as significantly higher scores on satisfaction, amount of information, and clarity with the information provided.

Secondary research uses of residual newborn screening dried bloodspots: a scoping review.

Purpose: Residual newborn screening dried bloodspots (DBS) are a valuable resource for research but the extent, type, and nature of uses are unknown. The objective of this research was to systematically review the published literature about secondary research uses of residual DBS using a scoping review protocol.

Methods: A total of 654 publications meeting the inclusion criteria with a 94% interrater reliability were identified.

Pre-implantation genetic testing: decisional factors to accept or decline among in vitro fertilization patients.

Purpose: Embryo testing to improve pregnancy outcomes among individuals who are seeking assisted reproduction technologies is increasing. The purpose of this study was to assess decisional factors through in-depth interviews for why women would accept or decline preimplantation genetic testing for aneuploidy (PGT-A) with in vitro fertilization (IVF).

Methods: Semi-structured telephone interviews were conducted with 37 women who were offered PGT-A with IVF during the summer 2017.

An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots.

As state newborn screening programs develop approaches to parental permission for the storage and use of residual dried newborn screening samples, it is important to understand how the public comprehends the consent elements. Focus groups in Utah, California, and Michigan ( n = 7 groups, 69 participants) were conducted to evaluate the language on a shortened consent form. Outcomes from the analysis included barriers to conceptualizing biospecimen research, the overly cautious tone and awkwardness of the consent form, and perceptions of community versus individual benefit.

Standardized ultrasound protocol, trained sonographers and digital system for carotid atherosclerosis screening.

Background And Purpose: Carotid intima-media thickness (IMT), a valid measure of atherosclerotic disease, has been proposed to be included in the algorithms for cardiovascular risk stratification. However, assessment of carotid IMT is still not easily performed in an office setting. In the present study, we evaluated the reproducibility of a standardized protocol for carotid artery atherosclerosis screening.