Following a meeting at the Brocher Foundation in Switzerland, a group of public interest advocates released this statement on heritable human genome editing. They viewed this statement as a corrective to the many statements released by experts in the sciences and bioethics. The authors object to endorsements from these groups to proceed with heritable genome editing research.
Following a UNESCO meeting in Paris, the International Bioethics Committee (IBC) released this report, which clarifies its stance on recent research related to human genomics. It includes special considerations for heritable genome editing and specifically calls for a moratorium on such applications. The reasoning the IBC provides is that such interventions raise “serious concerns,” including threats to human dignity and the prospect of eugenic applications.
UNESCO reacted to developments in genomics by releasing this declaration, which draws on the tradition of the United Nations’ 1948 Universal Declaration on Human Rights and is similarly framed in terms of human dignity, human rights, and fundamental freedoms. The declaration asserts that the human genome is the common heritage of humanity and establishes individual rights regarding the genome, including nondiscrimination, informed consent, and confidentiality. It identifies specific applications of genomics, namely human cloning, as contrary to human dignity.
This treaty is more commonly known as the “Oviedo Convention,” after the city in Spain where it was ratified. The Oviedo Convention is based on the European Convention of Human rights and is the only legally binding international instrument for protecting human rights in biology and medicine, covering both clinical and research settings and giving special consideration to human dignity. It lays out the rights of patients and research subjects for Europe, focusing largely on individual rights of informed consent and privacy but also mandating consideration of equitable access to health care.
In 2021, the Council of Europe determined that it was necessary to clarify the provisions of the Oviedo Convention pertaining to human genome editing. These clarifications were designed to clear up ambiguity surrounding the applicability of Article 13 of the Oviedo Convention to research and in particular, the use of the terms “preventive, diagnostic and therapeutic.” The clarifications approved by the Steering Committee for Human Rights in the fields of Biomedicine and Health (CDBIO) specify that Article 13’s restrictions apply to human genome editing for both clinical and research purposes.