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UNESCO Calls for More Regulations on Genome Editing, DTC Genetic Testing

NEW YORK (GenomeWeb) – The United Nations Educational, Scientific, and Cultural Organization's International Bioethics Committee called for a moratorium on germline genome editing and regulations on direct-to-consumer (DTC) genetic testing in a draft report published last week.

Gene editing technology "seems to require particular precautions and raises serious concerns," the report said, "especially if the editing of the human genome should be applied to the germline and therefore introduce hereditary modifications, which could be transmitted to future generations."

The Universal Declaration on the Human Genome and Human Rights, which all UNESCO member states have adopted, considers the human genome to be part of the heritage of humanity.

The report exhorted member states to "to boost the idea of shared global standard-setting and regulation" on genome editing, rather than address it in each individual state's legal system. States, however, should be allowed to adopt more detailed and stricter national regulations, the report said.

Germline editing with CRISPR/Cas9 has popped up as an issue in several international locales. In April, scientists at Sun Yat-sen University in China edited non-viable zygotes with CRISPR/Cas9. Last month, scientists from The Francis Crick Institute applied to UK regulators for a license to edit embryos in a non-clinical study on miscarriage.

The report also called for more regulations of the DTC genomic testing market. UNESCO's members should "promote and enforce clear regulations on the information to be supplied to possible users of these services" and provide for genetic counseling to help interpret results. Where genetic counseling is not feasible, the report suggested that, at a minimum, test providers should be obligated to provide information about the test and the meaning of its results.

"[T]he role of public authorities is essential to promote campaigns to inform citizens about the real or unfounded scientific basis of DTC tests and raise appropriate awareness," the report said.

The report also considered bioethics as it applies to biobanking, non-invasive prenatal testing, and precision medicine, and outlined potential areas of conflict with stated values of human rights values. It also made practical recommendations for UNESCO member nations.