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 Investigative genetic genealogy, a technique used by law enforcement to generate leads in criminal cases through searches of genetic genealogy databases, raises important privacy concerns for database participants and their families. This project will measure public preferences related to law enforcement participation in genetic genealogy databases and develop best practices for investigative genetic genealogy that operationalize these preferences by engaging experts and relevant constituencies.
ELSIcon2022 • Paper • May 27, 2022
Melissa Creary, Jodyn Platt, Sharon Kardia, Paige Nong
Objectives: To analyze racial differences in comfort with medical research using an alternative to the white racial frame that typically treats white people as raceless while problematizing Black people’s perspectives or experiences.
ELSIcon2022 • Pre-recorded Paper
- Paige Nong - University of Michigan
- Melissa Creary
- Jodyn Plat
- Sharon Kardia
White racial framing and comfort with medical research: a critical analysis
PROJECT SUMMARY/ABSTRACT The dream of open science for genomics is hindered by concerns about genomic data re-identification and the resulting restrictive data access protocols. The long-term goal is to create a technical ecosystem that can facilitate more open scientific practices for genomic research.
PROJECT NARRATIVE: Genetic counseling and health education are essential components of any early diagnosis program for sickle cell disease to ensure that risk results are effectively communicated by healthcare workers to those at-risk couples and their families. These are also important within the context of culture and health literacy because health beliefs and attitudes of the general public have a significant impact on health seeking behaviors that substantially influence reproductive decisions made by individuals and families.
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