PROJECT NARRATIVE If healthy babies are sequenced near birth, when should genetic information relevant to later stages of their lives be revealed? There are different possible strategies for when this genomic information is revealed, and this research will determine their clinical feasibility, analyze their ethical, legal and social implications, understand diverse parents' preferences, and seek consensus on the necessary and desirable features of a strategy.
PROJECT NARRATIVE This study aims to investigate facilitators and barriers to long-term equitable partnerships in genomics research between communities and research institutions. We focus on legal and organizational infrastructures and practices that shape how decisions are made, by whom, and with what consequences, and changes that can support innovative and transformative approaches to equity, benefit and justice.
PROJECT NARRATIVE Genetic testing is increasingly used in ill neonates and holds promise to improve care, but the uncertainty of many genetic results complicates their application to clinical practice and poses an important hazard. Uncertainty can lead both clinicians and parents to misunderstand or misapply findings, resulting in biased treatment plans.
Project Narrative We will continue the effort to promote the development of novel yet practical solutions for important privacy and security challenges in human genomic research, via organizing genomic privacy/security competitions and workshops, with emphasis on engaging/supporting researchers from nationally underrepresented groups to participate in our competitions and attend the workshops.
PROJECT NARRATIVE Between 1907 and the mid-1970s, 32 US states passed and implemented eugenic sterilization laws that authorized the sterilization of people considered unfit. Our epidemiological, historical and mixed-methods analysis of over 32,000 eugenic sterilization requests in five US states (California, North Carolina, Iowa, Michigan and Utah) identifies varying demographic patterns and documents changes in how eugenics laws were applied over time.
This application is for continued T32 support of a research training program at Stanford University to create independent scholars who can conduct rigorous research on ethical, legal and social implications of genetics and genomics (ELSI). Since 2016, with support of a T32 award, we have appointed 7 postdoctoral scholars into the program, all women, one Latina and one African-American. The goal of this renewal is to train 7 more postdoctoral fellows and to continue our successful contribution to the diversity and excellence of the ELSI research communities.
Project Narrative Genomic technologies promise to transform our understandings of human biology and history and offer unprecedented power to influence the health of individuals and generations. Such knowledge and power imply immense responsibility to use them in ways that promote social and ethical values in the service of the public’s health.