2020, or 20/20?

Near the end of 2018, He Jiankui was on the world’s stage announcing that he had edited the genome of twin girls, in the hope of making them resistant to HIV. On Tuesday, December 31, 2019, the Wall Street Journal (WSJ) printed a report that Dr. He and two others have been convicted of “illegally practicing medicine related to carrying out human-embryo gene-editing intended for reproduction.” (online version here).

A court in Shenzhen concluded that the defendants had acted for “fame and profit,” when they “deliberately violated the relevant national regulations, and crossed the bottom lines of scientific and medical ethics.” For the crime committed, He received the most severe sentence. In addition to the three-year prison sentence, He is banned for life from “working in the field of reproductive life sciences and from applying for related research grants, “ according to the WSJ.

The Xinhua News Agency also noted that a third genome-edited baby had been born, and that this child, along with the previously born twins, “would be monitored by government health departments.” The WSJ did not state for how long the monitoring would continue. Not only were the children experimental subjects as embryos, but they continue to be subjects as well. Further, these genome effects will affect their progeny, potentially into perpetuity. Additionally, the Smithsonian Magazine reports that in the summer of 2019, He met with “investors to discuss a potential commercial genetic modification clinic in Hainan, which aims to become a ‘world-class medical tourism hub’.”  One might reasonably call this “a crime against humanity,” even if it does not include genocide of humans already born. (For further reading, see David Luban, “A Theory of Crimes Against Humanity”)

In the print edition of the WSJ, alongside the article on He is an article about Pastor Wang Yi of the Early Rain Covenant Church. Pastor Wang was sentenced on 30 December to nine years in prison. His crime was “incitement of subversion of state power and illegal business operations” (online article here).

Consider that a pastor receives a nine-year sentence for an offense against the State; and a scientist, a sentence of three years for a crime against multiple generations, and indeed, humanity. In the year 2020, we could use a check of our understanding of what is important in the life of the world. Would that our vision were 20/20 also.

Regulating New Technologies

History’s lessons applied to Artificial Intelligence (AI) regulation is the subject of a recent Brookings article by Tom Wheeler.  He writes

Societies impose government oversight for the protection of old principles in a time of new technology. Foremost among those principles is each individual’s right to a future; and it comes in multiple manifestations. In the educational realm, it means adequate training to be meaningfully employed. Economically, it means maintaining the benefits of capitalism through checks on its inherent incentive to excess.

Most importantly, the right to a future begins with the belief that there is a future, and that national leaders care about whether individuals affected by new technologies participate in that future.

Although the author has AI in mind, it is interesting to consider his words in relationship to the regulation of human gene editing. Now is certainly “a time of new technology,” particularly regarding human germline gene editing.  The “old principles” of experimentation on human research subjects ethically done and informed consent, along with the restrictions/bans in many countries heretofore prohibiting human germline modification, come to mind.  Additionally and importantly, in Greely’s extensive review of how “CRISPR’d babies” came to be, he includes a welcome overview of the state of affairs regarding regulation (or not) of human germline genome editing, in the October 2019 Journal of Law and the Biosciences. 

An upcoming meeting (London, November 14-5) of the International Commission on the Clinical Use of Human Germline Genome Editing is slated to discuss more than governance of the technology. Their agenda is available here.  In addition to a discussion of issues and perspectives relayed by various parties in their evidence submitted to the Commission, there is a planned discussion of “how the rights of future people have been considered and established in other medical and nonmedical scenarios, and how consenting to any necessary or preferred long term follow up on behalf of future generations could be established.”

Exactly how does one generation prescribe the “necessary or preferred long term follow up” of succeeding generations? How does one generation assure consent of future generations? When Wheeler penned the Brookings article about AI regulation (quoted above), he wrote about the right to a future, which rests in part on the fact that “national leaders care about whether individuals affected by new technologies participate in that future.” It certainly seems reasonable that those who are affected by a project be allowed to participate in it – as something more than research subjects. If such is true for AI, how much truer should it be for those whose very selves are affected by the research! There has to date been no compelling reason to go forward with human germline genome editing, and there are many reasons not to proceed. The most appropriate regulation is a ban.