{"id":4597,"date":"2024-10-30T03:56:03","date_gmt":"2024-10-30T02:56:03","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-ethics\/?p=4597"},"modified":"2024-10-30T03:56:03","modified_gmt":"2024-10-30T02:56:03","slug":"he-jiankui-humanitys-common-heritage","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-ethics\/2024\/10\/30\/he-jiankui-humanitys-common-heritage\/","title":{"rendered":"He Jiankui & Humanity\u2019s Common Heritage"},"content":{"rendered":"

By Richard B. Gibson<\/p>\n

As many will remember, in 2018, now infamous Chinese researcher He Jiankui announced on YouTube<\/a> that, using CRISPR\/Cas9, he had been (jointly) responsible for creating gene-edited twins called Lulu & Nana. He and his team\u2019s purported aim was to engineer the twins to be resistant to HIV infection. Two days after the YouTube announcement, He presented and defended his work at the 2018 International Summit on Human Genome Editing (you can watch that here<\/a>). Unsurprisingly, however, this announcement was met with widespread shock, outrage, and derision. Julian Savulescu<\/a> said the experiment \u201cexposes healthy normal children to risks of gene editing for no real necessary benefit.\u201d At the same time, a joint letter<\/a> signed by over 100 Chinese biomedical researchers announced that He\u2019s actions were \u201ca huge blow to the international reputation and the development of Chinese science, especially in the field of biomedical research.\u201d Needless to say, most could have been more impressed.<\/p>\n

He was not deterred, however, and he continued to defend his work, saying<\/a>, \u201cI truly believe that, not only for this case but for millions of children, they need this protection since an HIV vaccine is not available. For this case I feel proud.\u201d The Chinese legal system, however, felt differently. He and two collaborators were sentenced to three years in prison<\/a> and fined three million Yuen for illegal medical practices, including forging ethics documents. What is more, it was revealed during that trial that He had, in fact, created not two but three gene-edited children<\/a>. Like Lulu and Nana, the third child’s true identity is unknown, and they haven\u2019t even been assigned an alias.<\/p>\n

One might think He would be laying low since his release from prison. You would, however, be mistaken. After a brief stint golfing, in 2023, The South China Morning Post<\/a> reported that He tried to obtain a Hong Kong work visa, for which he was originally successful. But this was promptly revoked as, according to authorities, He lied on the application. Today, He is now back working on human embryo genome editing in his own independent lab in Beijing.<\/p>\n

It is on Twitter (I shan\u2019t call it X) where He\u2019s really voicing his opinion, and over the past few months, his tweets have been getting increasingly noteworthy. He has said he will only publish his 2018 papers in Nature<\/em> or Science<\/em> as these are the only suitable venues for his work<\/a>, that he will only do interviews if journalists introduce him as a \u2018CRISPR pioneer\u2019 or \u2018gene editing pioneer\u2019<\/a> and that reproductive gene-editing should be allowed in Africa first<\/a>. Now, I want to avoid jumping into the myriad of ethical issues each one of these claims\/proposals raises. Instead, the following tweet piqued my interest.<\/p>\n

\"\"<\/a><\/p>\n

He’s focused on the parents here, singling them out as the only ones to whom he feels he might owe an apology. This is fascinating, as far as I see it, for two reasons.<\/p>\n

The first, which I only want to briefly touch upon, is his exclusion of the children as potential legitimate demanders of an apology. I am unsure why He excluded them from his tweet. It might be because he did not think of them as he wrote it and that if such children were to demand repentance from him, he might feel obligated to provide it. On the other hand, I wonder whether He thinks the children, even if they demand an apology, are not owed one because, vis \u00e0 vis Parfit\u2019s non-identity problem<\/a>, if not for He, they would not exist. It might also be that He thinks he has nothing to apologise to them for because he has, from his perspective, enhanced them.<\/p>\n

The second reason this tweet interests me is what it indicates to us about the limited, individualistic view He has regarding the impact of his actions. Through the application of CRISPR\/Cas9, He altered genomes. This can be construed as a single action that directly impacted three individuals: Lulu, Nana, and the unnamed third child. We can broaden this to encompass those children’s immediate families. After all, we can reasonably expect that these children will be subject to some sort of surveillance, be that state but more likely medical, for years to come, which would not be the case had they not been altered. This, in turn, will impact those children and their families\u2019 relationships. We could extend our horizons further to encompass those childrens’ descendants. After all, it is more than possible that such genetic changes will be passed on.<\/p>\n

However, I want to extend this further, not within the children’s family, ancestors, or descendants but to humanity itself.<\/p>\n

Article One of the UNESCO Universal Declaration on the Human Genome and Human Rights<\/a> states, \u201c[t]he human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity.\u201d As such, our genome is something we all have a stake in; that thing which, at our most foundational level, regardless of all other differences, actual or perceived, binds us together.<\/p>\n

He’s actions directly interfered with the heritage. Through his application of CRISPR\/Cas9, He and his collaborators nudged the genome that would eventually come to form the biological base rock of those three children closer to his idea of perfection. He meddled in something with which we all have an interest.<\/p>\n

Now, I am not saying that any alteration to the genome\u2014to our heritage\u2014is inherently forbidden. This would be an impossible standard to try and maintain in a world that constantly tries to exercise influence over how our genetics are expressed and within a body that cannot always resist such influences. Nor do I think that affiliating oneself with the common heritage approach inherently ties oneself to such a claim.<\/p>\n

Rather, I prefer to read it not as a statement of prohibition but one of permission. In essence, sufficient consent is necessary before we apply our knowledge and technology to the genome\u2019s direct shaping. I am unsure what sufficient consent looks like and who can provide it, and I will let better minds than me navigate that. However, what I think is clearer is that alterations to the genome of the type that He conducted are not singular instances. They are the first step in a likely reproduction chain that will eventually propagate such deliberative changes throughout a population. How big a population that is will depend on geographical, political, economic, biological, and personal factors. But, thanks to He, for better or worse, that first step has been taken, the first domino knocked over, and not all of us are on board with it.<\/p>\n

 <\/p>\n

Author: Richard B. Gibson<\/p>\n

Affiliation: Aston University<\/p>\n

Competing interests: none<\/p>\n

Social media accounts of post author: @RichardBGibson<\/p>\n","protected":false},"excerpt":{"rendered":"

By Richard B. Gibson As many will remember, in 2018, now infamous Chinese researcher He Jiankui announced on YouTube that, using CRISPR\/Cas9, he had been (jointly) responsible for creating gene-edited twins called Lulu & Nana. He and his team\u2019s purported aim was to engineer the twins to be resistant to HIV infection. Two days after […]<\/p>\n

Read More…<\/a><\/p>\n","protected":false},"author":503,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8046,8129,8090],"tags":[],"class_list":["post-4597","post","type-post","status-publish","format-standard","hentry","category-gene-editing","category-genome-editing","category-social-media"],"yoast_head":"\nHe Jiankui & Humanity\u2019s Common Heritage - Journal of Medical Ethics blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2024\/10\/30\/he-jiankui-humanitys-common-heritage\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"He Jiankui & Humanity\u2019s Common Heritage - Journal of Medical Ethics blog\" \/>\n<meta property=\"og:description\" content=\"By Richard B. 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