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. See MVI members below.

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.

Online events featuring Working Group and Coalition speakers (and additional guests): ​​​

• Genetic Justice from Start to Summit
• Equity, Sovereignty, and Racial Justice: Beyond Access in Debates on Human Genome Editing
• Forging new disability rights narratives about heritable genome editing

Missing Voices Initiative Working Group Members