Nothing about us without us: Advocacy and engagement in genetic medicine

20247 citationsJournal Article

Authors

Olabimpe Olayiwola · Roivant Sciences (United States)

Adam Castillejo · The Patients Association

Michael Louella · University of Washington

Moses Supercharger · Joint Clinical Research Centre

Evelyn Harlow · Joint Clinical Research Centre

Lynda Dee · AIDS United

Khadidja Abdallah

Abstract

The development of new genetic medicines to treat sickle cell disease highlights the need for greater collaboration between researchers and people with lived experiences. Drawing on the adage "Nothing about us, without us," we call for increased investments in community advocacy and engagement.

Topics & Keywords

Viral Infections and Outbreaks Research Hemoglobinopathies and Related Disorders

UN Sustainable Development Goals

Partnerships for the goals

Publication Details

Published in: Science Translational Medicine

Volume 16, Issue 746, pp. eadn2401-eadn2401

DOI: 10.1126/scitranslmed.adn2401

Field-Weighted Citation Impact: 2.72