International Commission on HHGE Channels Warnock Committee

In various ways, the International Commission on Heritable Human Genome Editing (HHGE) is built on the same grounds as the former Committee of Inquiry into Human Fertilisation and Embryology (Great Britain).  That committee was charged to “consider recent and potential developments in medicine and science related to human fertilisation and embryology; to consider what policies and safeguards should be applied, including consideration of the social, ethical and legal implications of these developments; and to make recommendations.”[1] 

The Committee of Inquiry into Human Fertilisation and Embryology became known as the Warnock Committee, named for its chair, philosopher (later, Baroness) Mary Warnock.  The  “recent” development of concern was a reference to the birth of Louise Joy Brown on July 25, 1978:  the world’s first baby born through in vitro fertilization (IVF).  “Potential” developments the committee addressed during their two-year stint included the use of human embryos in drug testing; nucleus substitution (cloning) to provide replacement organs; and the insertion of “replacement gene(s)” for genetic defects.[2]  These all have in common the use of embryos for research.  The majority of the Warnock Committee argued that if the embryo could not feel pain, and “there were no absolute outrage of general moral sentiment,” then “the embryo might be used for research”[3] In her memoir, Warnock wrote that, in the Warnock Committee deliberations, the “disputes were on the whole civilized:  we did not have any rampaging pro-lifers on the committee . . .”[4]

The recommendations made by the Warnock Committee became Britain’s Human Fertilisation and Embryology Act of 1990 (HFE Act) and gave rise to the regulatory agency, the Human Fertilisation and Embryology Authority (HFEA), established 1991.  The latter is the body responsible for the licensing and inspection of all labs in the U.K. that deal with IVF, donor insemination, and human embryo research, as well as the storage of sperm or eggs.  The HFEA also regulates and oversees the use of mitochondrial replacement techniques (MRT) in the United Kingdom.  The International Commission on Heritable Human Genome Editing (HHGE) used the MRT example to design it own “translational pathway”:

By a “translational pathway’ for HHGE, the Commission means the steps that would be needed to enable a proposed clinical use to proceed from preclinical research to application in humans. Elements that formed the pathway leading to clinical use of mitochondrial replacement techniques in the U.K. have informed the Commission’s development of a clinical pathway toward HHGE, presented in this report. (p 39/225)

The HHGE has, as a portion of its task,

a need for a framework to inform the development of a potential pathway from research to clinical use, recognizing that components of this framework may need to be periodically revised in response to our rapidly evolving knowledge. In addition, other important discussions are ongoing internationally about the implications for society of human germline genome editing and include issues such as access, equity, and consistency with religious views. (p 44/225)

Here’s hoping the HHGE will do a better job of listening than the Warnock Committee did.  Natasha Hammond-Browning, evaluating the Warnock Committee’s handling of the pieces of evidence submitted to it, concluded this:

. . . the Warnock Committee adopted a utilitarian approach in drawing up its recommendations, and it could be assumed that any evidence that adopted this approach would have been favoured over other bright line viewpoints; for example, the view that the embryo must be protected from conception, or the view that the embryo/foetus should not be protected at any stage of development.[5]

[1] Mary Warnock, A Question of Life:  The Warnock Report on Human Fertilisation & Embryology, (Oxford, UK: Basil Blackwell, 1985), 4.

[2] Ibid., 71-4.

[3] Ibid., xv.

[4] Mary Warnock, A Memoir – People & Places (London: Duckbacks, 2002), 33.

[5] Natasha Hammond-Browning, “Ethics, Embryos, and Evidence:  A Look Back at Warnock,” Medical Law Review 23(4): 588-619; doi: 10.1093/medlaw/fwv028.

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.