Social justice and human rights

Principles for Global Deliberations on Heritable Human Genome Editing

Current debates around genetic changes to the human germline are often centered on the safety of the technology. In an effort to shift the focus toward social justice and human rights issues, an international coalition of civil society advocates and academics has developed a set of principles.

Heritable human genome editing – using genetic modification tools such as CRISPR on embryos or gametes and using them for reproductive purposes – would alter the genes and traits of future generations. Despite the dire effects that this technology could have on society, it is rarely considered a social justice or human rights issue. Too often, public and policy discussions assume heritable genome editing is an issue for scientists or ethicists to decide. There is an urgent need for the voices and perspectives of advocates and scholars committed to social justice in deliberations about whether heritable genome editing should ever be used at all.

That is the purpose of the Missing Voices Initiative (MVI), a project organized by the US-based organization Center for Genetics and Society (CGS). MVI brings together civil society advocates and socially engaged scholars to model meaningful inclusion and amplify social justice and human rights perspectives in debates about heritable human genome editing.

The Gender Justice and Disability Rights Coalition (initiated as part of CGS’ Commitment to UN Women’s Generation Equality Forum, and later brought under the MVI umbrella) was formed to develop principles, model policies, and tools for advocacy to center gender, reproductive, and disability justice in policy-making on heritable genome editing.1 The Coalition is made up of 16 advocates and scholars from 10 countries working in a range of civil society organizations and academic institutions who are committed to feminist, disability rights, anti-eugenic, and intersecting justice-oriented perspectives.

The Coalition developed a comprehensive set of governance principles based in intersectional social justice perspectives to guide policy-making and public engagement on heritable genome editing. The 11 principles that make up the Coalition’s Social Justice and Human Rights Principles for Global Deliberations on Heritable Human Genome Editing “center women and pregnant people’s health, rights, and freedom from exploitation, and affirm the full inclusion and worth of all people with disabilities.” The principles prioritize gender, reproductive, and disability justice, while addressing the ways they are intertwined with racial, LGBTQ+, economic, intergenerational, and environmental justice and Indigenous sovereignty.

The Coalition’s conclusion is that there is no case for pursuing heritable human genome editing that is consistent with feminist and anti-eugenic principles.

Changing the conversation on heritable genome editing

Our Coalition is not alone in recognizing the ways that heritable genome editing would be dangerous to society. In fact, there is a widespread global policy consensus on prohibiting its use. At least 70 countries categorically prohibit heritable genome editing—including the 29 that have signed and ratified the Council of Europe’s Oviedo Convention—and no country in the world explicitly permits it. This fact is frequently downplayed or ignored in governance discussions that assume policy making on heritable genome editing can start with a blank slate.

The Principles create space for civil society advocates to bring social justice—particularly gender justice and disability rights—to the forefront of public and policy conversations on heritable genome editing. Prominent scientists, bioethicists, national science academies, international bodies such as the Council of Europe and the World Health Organization, and many others are in agreement that decisions about heritable genome editing cannot be made by scientists alone and should be influenced by the broader public. But there are varying ideas about what public participation would entail.

The scientists and bioethicists who have taken the lead in organizing high profile science policy conversations seem committed to limiting the role the public could play. Exercises in “public consultation,” which may seem to fulfill calls for public engagement, can also be manipulated to engineer public acceptance of heritable genome editing. The Principles therefore lay out in detail the necessary elements for robust, meaningful, and legitimate public deliberation that approaches true public empowerment.

One element highlighted in the Principles is the importance of accurate and unbiased information on heritable genome editing—for example, the significant distinction between somatic and heritable genome editing, and acknowledgment that it is not a medical treatment.

The Principles also stress the importance of including representatives from across social change sectors. In particular, those that highlight feminist and anti-eugenic perspectives bring unique perspectives on the broader political, economic, and societal context in which this technology would be researched, developed, and used. Drawing on lived experience and their work to build a fair and inclusive society, civil society advocates are well situated to anticipate how heritable genome editing would interact with existing inequalities, causing harm to marginalized communities and society as a whole. Centering voices and perspectives that are seriously engaging with disability rights, reproductive rights and justice, racial justice, health equity, and Indigenous sovereignty would fundamentally change the conversation.

The Social Justice and Human Rights Principles for Global Deliberations on Heritable Human Genome Editing make the case that this intersectional approach must be the starting point for discussions of heritable genome editing.

The Principles

These Principles lay out a vision for the world we want to live in, and ground our claim that there is no argument for pursuing heritable genome editing. The brief summary below outlines key points from each of the 11 principles. Learn more about each principle in the full document.2

Principle 1 calls for an inclusive global process to consider whether heritable genome editing should ever be pursued, based in acknowledgment of the potential harms of human experimentation required to develop this technology, particularly on women and pregnant people.

Principle 2 calls for women and gender expansive people from diverse backgrounds and contexts to lead policy making processes relating to heritable genome editing, acknowledging the ways that they have been prevented from controlling their reproductive lives.

Principle 3 affirms that decisions about using biotechnologies like heritable genome editing must be based in a stance that values all lives and diversity in bodies, intellect, and ability.

Principle 4 acknowledges the harmful history of eugenics and calls for science and medicine to reckon with its continuing legacies through education, policies on genetic non-discrimination, and comprehensive information and counseling about disability to parents undergoing reproductive genetic screening.

Principle 5 seeks to end disability discrimination by promoting a broader concept of health and pursuing solutions articulated by people with disabilities, rather than imposed techno-fixes like heritable genome editing.

Principle 6 acknowledges that health inequities would not be addressed by heritable genome editing, and calls for policies that ensure access to comprehensive health care and eliminate the structural and social roots of health inequity.

Principle 7 calls for policy that safeguards the rights, interests, dignity, and health of future generations, including anyone born through heritable genome editing.

Principle 8 seeks to ensure the right to self-govern genetic material and biological data and for communities participating in research to share in its benefits, supporting calls by Indigenous peoples and ethnic minorities.

Principle 9 calls for a precautionary approach in policy making, recognizing the unknown and unpredictable harms of heritable genome editing on future generations.

Principle 10 calls for regulation that prioritizes health, well-being, justice, equity, and human rights, in the face of rapid commercialization of biotechnologies and financial conflicts of interest that undermine this goal.

Principle 11 calls for implementation of programs for public empowerment, emphasizing the importance of engaging diverse perspectives, particularly from those who would be most affected by heritable genome editing and its potential harms.

As the Principles document declares: “It is essential to apply the frameworks of gender, disability, racial, reproductive, economic, environmental, and LGBTQ rights and justice, human rights, Indigenous sovereignty, and the rights of children and future generations in all policy concerning heritable human genome editing. Our future depends on it.”

The Gender Justice and Disability Rights Coalition on Heritable Genome Editing calls for governments to prioritize these social justice and human rights principles in policy making on heritable genome editing. There is no justification for pursuing heritable genome editing that conforms with these principles.

Next steps

The Principles have been endorsed by a range of organizations, advocates, and scholars. We plan to circulate them within Coalition members’ communities and networks, and distribute them widely to the media, policymakers, and members of influential committees and international bodies. We hope that the Principles will be translated into multiple languages and adapted for use in a variety of country, regional, and international contexts.

Based on these Principles, the Coalition is drafting model policy language that explicitly opposes heritable genome editing. We will also develop tools and resources to encourage advocates around the world to learn more about heritable genome editing as a social justice and human rights issue; to engage with and adapt the principles and model policies to their own national context; and to advocate for adoption of the proposed policies.

We encourage you to read the full Principles document and to stay tuned for the forthcoming model policy language and resources. Your participation and perspectives are urgently needed in the consequential public and policy debates about heritable genome editing.

By Dr. Katie Hasson, sociologist and Associate Director of the Center for Genetics and Society (USA),