Enforceable ethics in the age of gene enhancement

4 June 2019 by Rosalind English

The entanglement of law and ethics is always perilous when it involves the threat of prohibition. When Shenzhen scientists announced two years ago that they had edited the genes of twin human babies whilst still in vitro, voices of disapproval reverberated around the globe. Whilst it seems that gene modification of potential human life fills us with fear and loathing nothing has stood in the way of the race to refine this technology. Efforts to predict and restrict genetic engineering seem quaint and outmoded, from the UNESCO 1997 Declaration on the Human Genome and Human Rights, to the Council of Europe’s Convention in the same year to restrict the modification of the genome to therapeutic purposes only. These agreements, as well as the 2015 call by UNESCO for a moratorium on germline modification, are well past their sell by dates.

A new book on gene editing explores the potential for human society of our new found ability to screen and then modify human embryos before implantation. Jamie Metzl – “Hacking Darwin” – is not starry eyed about the future of this technology. But he asks us to face up to the consequences of unilateral disapproval of it. On the one hand, China has shown enthusiastic uptake; in a 2017 survey, the Chinese people on average “mildly agreed” that they would be comfortable genetically altering their future children. In the west, on the other hand, there is deep discomfort about this trend. It may be easy to secure democratic consensus against this kind of genetic interference but a country progressive enough to secure this consensus would also need to be open enough to allow parents seeking genetic enhancement for their offspring to travel abroad. The difficulties of enforcement of any restrictive legislation are intractable.

A government taking such a position, Metzl points out, would have to be consistent by not allowing genetically enhanced humans across its boarders, or, rather, the mothers bearing the genetically altered embryos from crossing into its territory.

If that doesn’t sound draconian enough, legislation would be required to protect the genetic integrity of the population by keeping other, genetically enhanced, populations out. This would require, perforce, performing genetic tests on all people entering the country.

More follows, including the necessary prevention of women from going abroad to have genetically engineered embryos implanted. In order to do that, a country set on maintaining a “pure” genetic population free of engineering, would have to perform pregnancy tests on all women of fertile age entering the country. As the author says,

If someone already in the country was identified as “enhanced”, what penalties could possibly be meted out? Even if enhanced people were stripped of their citizenship and exiled for giving birth to a geneticallly enhanced person, their children would also need to be imrpisoned, banned from procreating, or exiled.

Enforcing any of this would require building the oversight machinery of the most totalitarian, intrusive, abusive, and downright odious police state with the ability to track peoples’ movements and continually monitor their biology and that of their children.

Even the Universal Declaration of Human Rights, that venerable document, rests on shaky foundations in a world where it is possible to modify adult cells to the extent that they can be turned into precursors of egg cells. Its first clause announces that “All humans are born free and equal in dignity and rights”

As Metzl points out, that is where things get complicated.

What does the word “born” mean in this context? Does it apply to an early-stage embryo genetically altered prior to implantation?

He continues (referring to the stem cell technology and the increasing ability of scientists to induce “pluripotency” in mature cells, effectively reprogramming them to become stem cells at the start of life):

Changing the word “born” to “conceived” not only limits women’s reproductive rights but also means that each of the thousand fertilised eggs in a dish derived from a woman’s induced stem cells have the same rights as her ten-year old child.

This is clearly not going to work, and whatever legal pronouncements we may or may not make in advance of this technology will not be fit for purpose by the time it becomes cheap enough for most of the world’s voting electorates to avail themselves of it. Metzl himself struggles with the idea of a globally harmonised regulatory structure to pre-empt the problems of genetic enhancement, but none of his ideas, presented in the last chapter of the book, are any better than those arrived at by UNESCO and the Council of Europe twenty years ago.