PROJECT NARRATIVE Advances in genomic science are rapidly presenting both great opportunities and complex challenges for medicine and public health. In order for the potential benefits of these scientific and technological advances to be realized (and unintended harms minimized), numerous ethical, legal, and social implications (ELSI) will need to be addressed.
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 Advances in genomic science are rapidly presenting both great opportunities and complex challenges for medicine and public health. In order for the potential benefits of these scientific and technological advances to be realized (and unintended harms minimized), numerous ethical, legal, and social implications (ELSI) will need to be addressed.
PROJECT NARRATIVE The purpose of this R25 Diversity Action Plan grant proposal is to create a program that will equip students with disabilities with mentoring, research, and curricular resources that facilitate their advancement towards becoming members of the ELSI community of scholars.
Narrative American Indian and Alaska Native concerns about genomic research have been well-documented and continue to constitute significant obstacles to participation in genomic research. Our center seeks to make progress on these issues through community-led ELSI research and a commitment to training the next generation of leaders in the field, from both the academy and the community.
PROJECT NARRATIVE Advancements in prenatal genetic screening have significantly improved the identification of chromosomal abnormalities and heritable conditions during pregnancy, yet current standards for patient education in this domain are largely ineffective. The most effective approach to education about prenatal screening, is one-on- one genetic counseling, but due to the limited number of counselors this is not feasible, especially in rural and frontier areas.
Project Narrative The lack of American Indian and Alaska Native professionals in genomic sciences today highlights the tremendous need for effective training and research programs to prepare the next generation of indigenous students to be successful in their pursuit of careers in genetics research. This program combines didactic and experiential training activities, together with indigenous and community-based models of learning, to engage underrepresented Native students in research on the ethical, legal, and social implications of genomics research.
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