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

PROJECT NARRATIVE The goal of the proposed research is to investigate how clinical genomic sequencing impacts families of pediatric patients. This research will develop an empirically informed framework of normative values important to families of pediatric patients, including ethical, legal, and social implications (ELSI), which will then be used to elicit preferences for features of sequencing from a nationally representative sample of parents in the US.

Project Narrative This proposal seeks to investigate the ethical, social, and policy implications of a new kind of genetic information currently available to the public: polygenic scores for educational attainment (EA-PGS).

Prenatal screening and testing technologies using genetic methods are rapidly expanding, offering increasing amounts of genetic information about the fetus. However, research shows that women from underserved populations are less likely to receive or accept prenatal genetic services, leading to discordant birth outcomes. We propose to explore the barriers to access and acceptance of prenatal genetic care among women from underserved populations.

Project Narrative ?Ethical and Social Implications of In Vitro Gametogenesis? In vitro gametogenesis (IVG) is an emerging technology that involves making an egg or a sperm cell outside of the body from a skin cell or a progenitor germ cell, an approach recently validated in mouse models.

PROJECT NARRATIVE Human genome editing technologies are evolving rapidly and with this evolution brings questions regarding governance and the ethical implications involved in applying these technologies. The He Jiankui controversy is the primary example of the potential exploitation of HGE and the importance of self-governance. This project will be the first case-study to evaluate self-governance in the realm of human genome editing technologies, the findings of which will be validated through a survey of HGE scientists.

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

Puerto Ricans are especially at risk of experiencing distributive injustice, or the structural exclusion from participating in genetic research that could potentially benefit them.