This Pathway to Independence Award (K99/R00) investigates and leverages perspectives from members of the health-related private sector genomics industry, to develop guidance for improving approaches to social and ethical issues in the industry. It does so through in-depth qualitative analysis (interviews, cases studies, comparative analysis), scholarly normative analysis (drawing on theories from bioethics and business ethics), and a Delphi process of iterative questionnaires with industry stakeholders, aimed at strategizing concrete change regarding social obligations of the industry.

PROJECT NARRATIVE: Recent recommendations to return children?s results for adult-onset conditions to parents anytime whole exome or genome sequencing is performed, as well as growing expectations to return research results to participants on a large-scale basis, mean adolescents will increasingly be engaged in assenting (<age 18) and consenting (>age 18) to return of genomic research results. There is an urgent need to understand adolescents?

PROJECT NARRATIVE Human genome editing is a powerful tool for creating precise changes to the genome, the complete set of genetic material. However, human genome editing raises significant ethical, legal, and social challenges, and making policy that can better anticipate and prepare for these challenges is urgently needed. This project will be the first comprehensive empirical study to apply strategies of anticipatory governance to the management and control of human genome editing technologies.

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.