Human Rights
Human rights law and discourse help to ensure respect for individual worth and the common good in the face of powerful biotechnologies. Claims to universal human rights depend, in part, on formal recognition of our common humanity. Drawing on human rights as a broad framework for establishing policies regarding human biotechnologies, both the Council of Europe’s Convention on Human Rights and Biomedicine (Oviedo Convention) and UNESCO’s Universal Declaration on the Human Genome and Human Rights reject genetic modifications that would alter the genomes of future generations.
The webinar took place on October 4, 2018 and was co-sponsored by OpenGlobalRights and the Center for Genetics and Society...
To: The Biden-Harris Administration
From: Marcy Darnovsky, PhD, Executive Director, Center for Genetics and Society[1]
December 2020
Heritable...
February 8, 2022
A genetic disease runs in your family. Your doctor tells you that, should you wish to have a child, that child is likely to also carry the disease. But a new gene-editing technology could change your fate. It could ensure that your baby is -- and remains -- healthy. Even more, it could potentially make sure your grandchildren are also free of the disease. What do you do? Now, imagine it's not a rare genetic disorder, but general illness, or eye color, or cognitive ability, or athleticism. Do you opt into this new world of genetically edited humans? And what if it's not just you. What your friends, neighbors, and colleagues are also embracing this genetic revolution? Right now, science doesn't give you that choice. But huge advancements in CRISPR technology are making human gene editing a reality. In fact, in 2018, a Chinese scientist announced the first genetically modified babies; twin girls made to resist HIV, smallpox, and malaria. The promise of this technology is clear. But gene editing is not without its perils. Its critics say the technology is destined to exacerbate inequality, pressure all parents (and nations) into editing their children to stay competitive, and meddling with the most basic aspect of our humanity. In this context, we ask the question: Should we use gene editing to make better babies?
FOR THE MOTION: Dr. George Church Professor of Genetics, Harvard and MIT & Founder, Personal Genome Project; Amy Webb Futurist & Author, "The Genesis Machine"
AGAINST THE MOTION: Marcy Darnovsky, Policy Advocate; Françoise Baylis, Philosopher
Published September 21, 2022
How should we talk about equity in the context of human genome editing? While sky-high costs and lack of access to potential somatic gene therapies are important to address, we also need to ask critical questions about health equity, sovereignty, and racial justice––particularly in relation to heritable genome editing, which would alter the genes and traits of future generations. This roundtable discussion with Indigenous geneticist-bioethicist Krystal Tsosie, reproductive justice scholar and advocate Dorothy Roberts, and educator and activist Milton Reynolds addresses the legacies of eugenics, honoring Indigenous sovereignty, decolonizing DNA, and why conversations about heritable genome editing urgently need voices and perspectives grounded in social justice and human rights. This discussion was hosted by Center for Genetics and Society and moderated by CGS associate director Katie Hasson.
Access a full transcript and learn more about the event and speakers at https://www.geneticsandsociety.org/in....
Published March 2, 2023
This two-part online CGS event centers social justice and human rights, presenting voices and perspectives from feminist, disability rights, reproductive rights and justice, racial justice, environmental, and human rights movements and scholars, who question whether heritable genome editing has any place in a fair and inclusive future. Day 2 of the symposium includes two panels: "Missing voices speak out," featuring Larkin Taylor Parker, Abril Saldaña, Dana Perls, and Nourbese Flint, and moderated by Emily Galpern; and "Genetic justice beyond the summit," featuring Isabelle Bartram, Maria Ní Flatharta, Milton Reynolds, and Katie Hasson.
This two-part online CGS event centers social justice and human rights, presenting voices and perspectives from feminist, disability rights, reproductive rights and justice, racial justice, environmental, and human rights movements and scholars, who question whether heritable genome editing has any place in a fair and inclusive future. Part one took place on February 27, 2023 and features CGS Executive Director Marcy Darnovsky discussing history and context of the Summit process, followed by Dorothy Roberts, Rosemarie Garland-Thomson, George Annas and Silvia Yee (moderator) in conversation to discuss the social justice case against heritable genome editing.
Bill McKibben and john a. powell came discuss the “Climate Crisis, Designer Babies, and Our Common Future.” The event was moderated by Osagie K. Obasogie, Professor of Bioethics at UC Berkeley.