{"id":680,"date":"2024-09-17T07:51:15","date_gmt":"2024-09-17T07:51:15","guid":{"rendered":"https:\/\/coalitionstopdesignerbabies.net\/?p=680"},"modified":"2024-09-17T08:44:35","modified_gmt":"2024-09-17T08:44:35","slug":"groundbreaking-principles-on-heritable-genome-editing-bring-social-justice-voices-to-the-fore","status":"publish","type":"post","link":"https:\/\/coalitionstopdesignerbabies.net\/?p=680","title":{"rendered":"[CGS] Groundbreaking principles on heritable genome editing bring social justice voices to the fore"},"content":{"rendered":"

Original post here<\/a><\/em>\u00a0(02.14.2024).<\/p>\n

\"Blue<\/p>\n

The Center for Genetics and Society<\/a>\u2019 Gender Justice and Disability Rights Coalition<\/a>\u00a0has just released\u00a0Social Justice and Human Rights Principles for Global Deliberations on Heritable Genome Editing<\/a><\/em>. The Principles explicitly center gender justice, disability rights, and human rights in deliberations addressing heritable genome editing, an arena that has largely been the purview of scientists and bioethicists. The Principles have been\u00a0endorsed by more than 70 individuals and organizations<\/a>\u00a0from around the world.<\/p>\n

Heritable genome editing \u2013 using CRISPR or other tools to alter the DNA of embryos or gametes in order to create genetically modified children \u2013 is\u00a0prohibited by scores of countries and an international treaty<\/a>, yet continues to be debated and even promoted in some influential circles.<\/p>\n

The new Principles go beyond concerns about safety and medical ethics to encompass a range of social justice and human rights issues. They prioritize women and pregnant people’s health, rights, and freedom from exploitation and affirm the full inclusion and worth of people with disabilities. They also foreground racial, LGBTQ+, economic, intergenerational, and environmental justice and Indigenous sovereignty.<\/p>\n

Silvia Yee, Public Policy Director at\u00a0Disability Rights Education and Defense Fund (DREDF),<\/a>\u00a0an organizational member of the Coalition, applauds the Principles for valuing the lives of people with disabilities and their inclusion in any decisions regarding this technology. \u201cPeople with disabilities have always existed and have always fought to be recognized as fully human, having equal dignity and worth as those without disabilities. Over decades, we have slowly achieved enforceable legal rights, a broader recognition of ableism and implicit disability bias, and a discernible presence in our communities all around the world.\u201d<\/p>\n

Yee continued, \u201cA key question for the disability community now is whether we have gained enough ground in our fight to be able to resist the latest promise to \u2018advance humanity\u2019 through the use of heritable genome editing. This technology sells itself through promising the elimination of disability, undermining efforts to change the many environmental conditions that make it hard to live with disability. DREDF supports the new Principles because they give us an alternative vision of a truly inclusive process for considering genetic manipulation that does not shut out or devalue people with disabilities and other directly affected populations.\u201d<\/p>\n

Larkin Taylor-Parker, Legal Director of the\u00a0Autistic Self Advocacy Network (ASAN),<\/a>\u00a0another organizational member of the Coalition, echoes Yee\u2019s comments and emphasizes the eugenic nature of this technology. \u201cPromoting the development of heritable human genome editing reinforces societal stigma about disability and bolsters eugenic beliefs that our world is better off without people with disabilities. Instead, we should recognize the inherent worth and dignity of people with disabilities and harness resources to create environments where people of all abilities can participate fully.\u201d<\/p>\n

The Gender Justice and Disability Rights Coalition calls on governments to prioritize social justice and human rights in any policies related to this technology. The eleven principles are based in intersectional social justice perspectives and intended to guide public engagement and policy making on heritable genome editing.<\/p>\n

Endorsers of the Principles illuminate the importance of addressing the topic of heritable genome editing within social justice movements. \u201cHeritable genome editing is a reproductive justice issue,\u201d said Onyemma Obiekea, Policy Director for\u00a0Black Women for Wellness<\/a>\u00a0and\u00a0Black Women for Wellness Action Project<\/a>, both of which are organizational endorsers of the Principles. \u201cDevelopment of this technology would only be possible on the backs of women and pregnant people. Its implications stand only\u00a0to continue\u00a0a devastating legacy of reproductive oppression. The new Principles offer guidance towards an equitable and liberated\u00a0future, calling on governments and society to choose a different path.\u201d<\/p>\n

Abril Salda\u00f1a Tejeda, Associate Professor of Sociology at the University of Guanajuato, Mexico and a member of the Coalition, highlights the necessity of Global South voices in addressing the prospect of heritable genome editing. \u201cGovernance of new technologies implies recognizing a power imbalance in the global geographies of knowledge.\u00a0Narratives of scientific progress from the Global North have\u00a0historically\u00a0enabled colonial violence against Global South countries, resulting in ethical concerns about human life and reproduction that vary across countries.\u00a0The Global South\u2014scientists and non-scientists alike\u2014must be part of the debates over the future of human genome editing.\u201d<\/p>\n

The\u00a0Gender Justice and Disability Rights Coalition on Heritable Genome Editing<\/a>, which developed the Principles, is an international group of 16 scholars, advocates, and organizations from 10 countries. The Coalition was launched as part of CGS\u2019 commitment to UN Women\u2019s\u00a0Generation Equality Forum<\/a>. The Coalition\u2019s objectives include developing principles, model policies, and tools for advocacy that center gender, reproductive, and disability justice in public deliberations and policy making on heritable genome editing.<\/p>\n

Read the\u00a0full text<\/a>\u00a0of the\u00a0<\/em>Social Justice and Human Rights Principles for Global Deliberations on Heritable Human Genome Editing. A\u00a0summary version<\/a>\u00a0is also available.<\/em><\/p>\n

Update, June 27, 2024: Spanish and German translations of the Social Justice and Human Rights Principles for Global Deliberations on Heritable Genome Editing are available.\u00a0<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Original post here\u00a0(02.14.2024). The Center for Genetics and Society\u2019 Gender Justice and Disability Rights Coalition\u00a0has just released\u00a0Social Justice and Human Rights Principles for Global Deliberations on Heritable Genome Editing. The…<\/p>\n","protected":false},"author":1,"featured_media":684,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_editorskit_title_hidden":false,"_editorskit_reading_time":0,"_editorskit_is_block_options_detached":false,"_editorskit_block_options_position":"{}","footnotes":""},"categories":[98],"tags":[],"class_list":["post-680","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-coalition-members-contribution"],"_links":{"self":[{"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=\/wp\/v2\/posts\/680","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=680"}],"version-history":[{"count":5,"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=\/wp\/v2\/posts\/680\/revisions"}],"predecessor-version":[{"id":728,"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=\/wp\/v2\/posts\/680\/revisions\/728"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=\/wp\/v2\/media\/684"}],"wp:attachment":[{"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=680"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=680"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/coalitionstopdesignerbabies.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=680"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}