Fagerlin and colleagues developed the Subjective Numeracy Scale (SNS) to distinguish low- and high quantitative ability individuals for use with patients that need to understand the risks of medical treatments. The SNS is a self report numeracy measure.
Advances stemming from the Human Genome Project have prompted concerns about the general public's readiness to utilize this information to make informed health decisions. As a strategy to increase genetic literacy among the general public, tools are now available to enable individuals to record their family health history. However, little is known about whether the public is able to access the tools, understand how to use them, and apply the information by taking health protective actions, which can compromise the potential effectiveness of the tools.
The Human Genome Project and the International HapMap Project have produced significant resources for understanding the genetic bases for health and disease, including identifying genetic variations, genetic mutations, and genomic functions. The interpretation and reporting of findings from these resources have direct and immediate implications for researchers, the news media, and the general public. Knowledge gaps and low health literacy limit how well many people understand health and genetic information and can therefore influence their decisions and actions.
The University of Utah Center for Excellence in ELSI Research (UCEER) will conduct strategic planning for ELSI research, training and mentoring, and conduct two pilot projects. The focus of the UCEER will be population screening for genetic conditions in the health care of women and children. Our specific focus will be prenatal genetic screening and newborn screening. We will build on our strengths and experience to develop a collaborative, transdisciplinary center for research and training in ELSI issues.
As clinical neuroscience rapidly progresses, mental disorders are increasingly explained in terms of biological mechanisms (e.g., depression is caused by chemical imbalances). The proposed project will examine (i) whether laypeople and practicing clinicians are open to such biological explanations, (ii) how biological explanations impact opinions about mental disorders among clinicians and those who display symptoms, and (iii) how negative effects of biological accounts can be reduced.
This application seeks to better understand the needs of patients undergoing genomic testing with respect to the understanding of an adaptation to genomic information through genomic counseling. Through an existing partnership between the Ohio State University Medical Center and the Coriell Institute's Personalized Medicine Collaborative, over 5000 participants have been enrolled in two studies aimed at evaluating the utility of personalized medicine.
Rapid advances in human genetics have prompted concerns about the public's readiness to process and utilize the knowledge gained to make informed decisions about their health. To facilitate "genetic literacy," several government agencies including the Office of the Surgeon General and the Centers for Disease Control and Prevention (CDC) have advocated for the increased use of family health history assessment. The family health history, currently underutilized in primary care, offers an ideal proxy to assess genomic risk and is the simplest applied genomic tool available.
Being transparent about the use of data collected during clinical care is important to establish trust relationships between patients and researchers. We propose to develop a system to elicit patient preferences for clinical data sharing that takes into account what data are going to be shared and who is going to be the recipient of shared data. Lessons learned from a pilot study indicate that providing such options in a real clinical setting does not result in massive patient withdrawal in data sharing.
This application is to fund the University of Utah Center of Excellence in ELSI Research (UCEER). The University of Utah has a strong tradition in human genetics and ELSI research and this proposal will build on our successful development and management of a P20 funded CEER. The proposed UCEER will focus primarily, although not exclusively, on issues relevant to population screening for genetic conditions in the healthcare of women, children, and young families.