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

Autor: Olayiwola O; Roivant Social Ventures, New York City, NY, USA., Castillejo A; London Patient, London, UK., Louella M; University of Washington, Seattle, WA, USA., Supercharger M; Joint Adherent Brothers and Sisters Against AIDS (JABASA), Kampala, Uganda., Harlow E; Joint Clinical Research Center (JCRC), Kampala, Uganda., Dee L; AIDS Action Baltimore, Baltimore, MD, USA., Abdallah K; University of Leuven, Leuven, Belgium., Kityo-Mutuluuza C; Joint Clinical Research Center (JCRC), Kampala, Uganda., Adair JE; Fred Hutchinson Cancer Center, Seattle, WA, USA., Orentas R; Caring Cross, Gaithersburg, MD, USA., Dubé K; University of California San Diego (UCSD), San Diego, CA, USA.; University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USA.
Jazyk: angličtina
Zdroj: Science translational medicine [Sci Transl Med] 2024 May 08; Vol. 16 (746), pp. eadn2401. Date of Electronic Publication: 2024 May 08.
DOI: 10.1126/scitranslmed.adn2401
Abstrakt: 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.
Databáze: MEDLINE