Groningen Journal of International Law

International Law Under Construction


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The birth of Lulu and Nana: testing the boundaries of freedom of research?

Dr Rumiana Yotova | rvy21@cam.ac.uk

I. Genome Editing and the Case of Lulu and Nana

In November 2018, the Chinese scientist Dr He Jiankui reported the birth of the first genetically edited babies – Lulu and Nana- as a result of his editing and implanting of the embryos of seven couples with HIV-positive fathers in order to make them resistant to the virus. This announcement was met with universal condemnation and serious concern by scientists and International Organisations, strongly indicating that clinical research involving genome editing is not deemed to be acceptable at this stage. The Statement of the Second International Summit on Human Genome Editing, where the experiment was first announced held that ‘the procedure was irresponsible and failed to conform to international norms’ due to, inter alia, the ‘failure to meet ethical standards for protecting the welfare of research subjects and a lack of transparency in the development, review and conduct of the clinical procedures.’ The Summit ultimately concluded that ‘the scientific understanding and technical requirements for clinical practice remain too uncertain and the risks too great to permit clinical trials of germline editing at this time.’ Similar concerns were expressed in the statements in response by the Chinese Academy of Medical Sciences, the French National Academy of Medicine and the Academy of Sciences and the Nuffield Council on Bioethics. China’s Science Ministry reportedly suspended the scientific activities of those involved in the experiment, the Medical Ethics Committee of Shenzhen province opened an investigation into it and He was put under house arrest. In response, the WHO established a panel of experts to look into the international standards that should apply when editing the human genome with specific focus on interfering with the germline, i.e., the cells that we pass to future generations.

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