Investigating ethical challenges in emerging precision medicine research with disability communities: The case of cerebral palsy

Innovations in precision medicine are rapidly changing scientific understandings of the causes of and potential treatments for the broad range of health conditions affecting the one-in-four Americans living with disabilities. Alongside the potential benefits of precision medicine research (PMR) initiatives comes a diversity of perspectives on the role PMR and precision medicine should play in treating or curing disabling conditions.

Contemporary bioethics and policy changes for children with profound disabilities: Cardiac Surgery in Children with Trisomy 18

ELSIcon2024 • Panel • June 12, 2024 

Authors:

Corresponding Author: Benjamin Wilfond, MD (he/him/his) - Seattle Children's Research Institute

Panelist: Jennifer Castillo, JD - Trisomy Collaborative

Panelist: John Carey, MD, MPH, FAAP, FACMGG (he/him/his) - University of Utah

Panelist: Mark Mecurio - Yale University 

Panelist: Katherine Kosiv, MD (she/her/hers) - Yale University

Cross-Disciplinary Research and Public Engagement on Eugenic Sterilization: Mixed Methods, Data Visualization, and Cross-State Comparisons

ELSIcon2024 • Panel • June 12, 2024 

Authors:

Moderator: Nicole Novak, PhD, MSc (she/her/hers) - University of Iowa

Panelist: Heather Dron, PhD, MPH (she/her/hers) - University of California, Los Angeles

Panelist: Kate O'Connor, MPH, MA (they/she) - University of Michigan

Panelist: Alexandra Stern (she/her/hers) - University of California, Los Angeles

ELSIcon2024: Proper Parents: Poverty, Disability, Race, and Reproductive Control after the Eugenics Era

ELSIcon2024 • Panel • June 10, 2024 

Authors:

Corresponding Author: Natalie Lira

Panelist: Jim Tabery, PhD – University of Utah

Panelist: Marie Kaniecki, MPH (she/her/hers) – University of California Los Angeles

Panelist: Jennifer James, PhD, MSW, MSSP – University of California, San Francisco