MVI Working Group | Gender Justice & Disability Rights Coalition
Despite repeated and explicit calls for broad societal inclusion – including from high-profile scientific bodies – meaningful engagement efforts related to heritable genome editing have not been supported or encouraged. Robust consideration of social and ethical concerns has not occurred, and existing prohibitions against heritable genome editing in 75 nations and an international treaty have been routinely downplayed.
To meet this challenge, the Center for Genetics and Society launched the Missing Voices Initiative in late 2021. This effort brings together civil society advocates and socially engaged scholars in a process aimed at amplifying social justice and human rights voices and perspectives in debates about heritable genome editing and modeling meaningful inclusion of these key voices and perspectives in policymaking. The Initiative has two parts: The Working Group addresses a broad range of concerns and is laying the foundation for a larger ongoing network. The Gender Justice and Disability Rights Coalition specifically illuminates the importance of gender justice and disability rights angles on the issues. Learn more about each by clicking on the tabs above.
CGS initially convened the Missing Voices Initiative to influence the Third International Summit on Human Genome Editing but ultimately has more far-reaching goals: 1) to shift public and media conversations about heritable genome editing to center social justice and human rights and 2) to achieve laws and policies that prohibit this dangerous technology.
In this time of reckoning over eugenic abuses, the persistence of racism, and stark health inequities brought to light by a global pandemic, it has become clear that human rights and social justice concerns must be at the forefront of all policy discussions – especially those pertaining to powerful new technologies with effects on all humanity. These essential yet neglected voices and concerns must be included and empowered in public discussions and policy debates about human genome editing, and in national, regional, and international events.
Recent online events featuring MVI Working Group and Coalition speakers (and additional guests):
The third panel in CGS' Missing Voices Initiative webinar series, this roundtable conversation featuring Kavita Ramdas, Alana Cattapan, and Amrita Pande and moderated by Susan Berke Fogel explored the perilous prospect of reproductive uses of human genome editing from the perspective of feminist and reproductive justice scholars and advocates. Their intersectional analyses illuminated concerns related to eugenics and the rapidly expanding global fertility industry.
ASL interpretation and captions are available in the recording.
Civil society voices and perspectives, particularly those grounded in social justice and human rights, need to be at the center of discussions around heritable human genome editing.
Held just before the Third International Summit on Human Genome Editing, this two-part online CGS event centered 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 questioned whether heritable genome editing has any place in a fair and inclusive future.
ASL interpretation and captions are available in the recording.
The prospect of using CRISPR gene editing in reproduction is often justified by claims that it will eliminate disease and disability. But these claims draw on societal narratives that devalue people with disabilities.
In this roundtable conversation co-sponsored by DREDF, Silvia Yee (Disability Rights Education and Defense Fund), Larkin Taylor-Parker (Autistic Self Advocacy Network), and Teresa Blankmeyer Burke (Gallaudet University) explore how new disability rights narratives can challenge uses of genetic and reproductive technologies based in ingrained ableism, and promote futures in which disabled people flourish. Rebecca Cokley (Ford Foundation) moderated the discussion.
ASL interpretation and captions are available in the recording.
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.
In this roundtable discussion, held on September 14, 2022, Indigenous geneticist-bioethicist Krystal Tsosie, reproductive justice scholar and advocate Dorothy Roberts, and educator and activist Milton Reynolds addressed 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.
The discussion was moderated by CGS associate director Katie Hasson. ASL interpretation and captions are available in the recording.