PROJECT NARRATIVE Consumer protections are of rising importance to the sustainability of personal genomics and mobile health industries and realization of precision health, yet the extent of consumer protections available from the Federal Trade Commission (the primary federal agency in the United States responsible for ensuring online privacy and data security beyond medical settings, for the prevention of unfair and deceptive trade practices of companies that might not be governed by HIPAA, and for promoting innovation) are poorly characterized and have received surprisingly little ELSI re

Narrative The diversification of genomics research cohorts is a national priority intended to accelerate research and improve individualized prevention, treatment and care. Concrete, tailored strategies are needed to ethically engage various individuals living in the rural South to promote equitable access to genomic discovery and translation. Thus, the proposed study leverages a multi-disciplinary team and stakeholder-engaged approach to ultimately identify best practices for community translation of genomic discoveries.

PROJECT NARRATIVE/ RELEVANCE OF PROJECT TO RESEARCH AND PUBLIC HEALTH Widespread utilization of genomic sequencing in medicine creates an urgent need to educate providers and patients. Currently, providers frequently misinterpret genomic information and patients often don't understand their own test results. In order to address this critical need, we propose to design and test multiple e-Health communication tools that will help providers and patients to better understand genomic data, lead to higher quality patient care, and facilitate genomic information sharing within families.

PROJECT NARRATIVE Very little research has been done regarding non-STI-related health disparities affecting sexual and gender minorities (SGM). Even less is known about what these minorities think about the desirability of research that combines genetic variation and data about sexual orientation and gender identity with other health and demographic information, strategies required to understand and address these disparities.

Project Narrative The potential benefits and harms of returning genomic results to children and their parents are matters of enduring controversy?especially genomic results for adult-onset conditions that are not medically actionable in childhood. Empirical data to support either position in this controversy are, however, lacking.

PROJECT NARRATIVE The University of Utah Center for Excellence in ELSI research explores issues relevant to population testing and screening for genetic conditions in the healthcare of women and children, as well as ELSI issues arising from testing and screening in the broader family context and responses to disabilities identified through genetic technologies. The Center supports cores in research, education and career advancement, and administration.

PROJECT NARRATIVE Little is known about how health care providers (HCPs) will react to, and use, genomic information in patient care. The goal of this study is to understand how genomic information impacts HCPs and to make recommendations that will enhance HCPs' ability to successful integrate this information into clinical medicine.

PROJECT NARRATIVE The central goal of the proposed research is to determine the cost-effectiveness of integrating whole genome sequencing into the care of healthy adults. We will assess the health impact and cumulative healthcare costs of participants of a randomized clinical trial of whole genome sequencing five years after they received results, and we will extend these analyses over patients' lifetimes using decision analytic models. Findings will inform development of clinical guidelines and reimbursement strategies to accelerate the integration of sequencing into medical care.

PROJECT NARRATIVE When Americans interact with everyday technology such as mobile applications and websites, they leave behind digital footprints that can reveal a great deal about individual health. The proposed research will define the emerging ?health-relevant digital footprint? and evaluate consumer preferences around use of information from inside and outside the health care system.

The overall goal of this project is to understand how to encourage and enable people who are developing artificial intelligence for personalized health care to be aware of values in their daily practice. We will examine actual practices and contexts in which design decisions are made for precision medicine applications, and use this information to design group-based workshop exercises to increase awareness of values.