Co-Moderators: Liza Johnson, MD, MPH, MSB & Mildred Cho, PhD
Presenters: Jeanne O'Brien, MD, MSc & Joshua Combs, MD, FACOG
Link to pre-recorded video: Will it be easier to cure sickle cell disease through gene therapy than prevent the disease through pre-implantation genetic testing for the selection of unaffected embryos?
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.
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 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.
ELSIcon2022 • Pre-recorded Flash
- Alyx Vogle, CGC; Betty Cohn; Rebecca Ferber; Kerry Ryan; Gregory Feero; Debra Mathews; Anya Prince; Kayte Spector-Bagdady; Kunai Sanghavi; Wendy Uhlmann; Charles Lee; J. Scott Roberts
INSIGHT @ Work: An Interdisciplinary Study on the Ethical, Legal and Social, Implications (ELSI) of Voluntary Workplace Genomic Testing (wGT)
ELSIcon2022 • Pre-recorded Panel
- Gemme Campbell-Salome - Geisinger
- Amy Sturm
- Kelly Morgan
- Eric Tricou, MS, CGC - Geisinger, Genetic Counselor
Innovating Equitable Communication Modalities for Patient Activation and Cascade Testing for Familial Hypercholesterolemia: Cases of Ethical, Legal, and Social Complexities from a Pragmatic Trial
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.