Fear of eugenics shouldn’t put a stop to gene editing
Ethical concerns about a brave new world of designer babies are legitimate, but we can’t slam the door on the future, writes David Aaronovitch.
If you walk southwest from the Brandenburg Gate in Berlin, you will pass a long wall made of blue glass. It marks the spot at No 4 Tiergartenstrasse (the house no longer exists) that acted as the headquarters of Aktion T4, the operation to murder people deemed genetically undesirable. As many as 275,000 people – mentally ill, physically disabled or ‘‘criminal’’ – were killed, usually by gassing.
To many people, the Nazi programmes to ‘‘cleanse’’ the Aryan race of undesirable qualities represent the logical conclusion of the science of eugenics. The appalling history of eugenics is always there in the background whenever the genetic manipulation of human beings is discussed, and this week was no exception.
On Tuesday the Nuffield Council on Bioethics, an expert body set up in Britain in 1991 to help chart the choppy ethical waters of the new biosciences, issued a report entitled Genome Editing and Human Reproduction: social and ethical issues. In essence, it recommended that developments in gene-editing technology required a debate on the ethics of genetic manipulation. ‘‘We find ourselves in a new situation,’’ committee chairwoman Karen Yeung said. ‘‘The ground is shifting and this generates new responsibilities.’’
Under what circumstances, it asked, might it be permissible to create genetically altered children? Immediately a number of people said: ‘‘None.’’
So what are we talking about? Essentially, the ability to modify sperm, eggs or early-stage embryos to remove or insert certain genetic material. This could mean snipping out a gene mutation that causes a life-shortening and often horrible heritable disease such as Huntington’s or cystic fibrosis, and in the process of modification possibly removing the disease from the gene pool.
Or a whole lot of other things; it was reported recently that Chinese researchers had modified beagle embryos to give dogs bigger leg muscles. None of this is imminently applicable to humans, Nuffield says, but the capability is on its way.
So while Nuffield wasn’t recommending any change in the law now, it was suggesting that we consider the circumstances under which we would permit genome editing. This suggestion alone was enough to alarm many ethicists. But where once the fear was about what governments might do in the hunt for the perfect citizen, now it’s all about how we as individuals and consumers might demand or be seduced into demanding perfect children.
Thus, says Marcy Darnovsky, of the US-based Centre for Genetics and Society, what is happening is the opening of a door ‘‘to a world of genetic haves and have-nots’’ in which ‘‘parents pursued projects to improve their children at the one-cell stage’’. Those with money would do as private-school parents do: seek to buy comparative advantage for their offspring, but at the zygotic stage.
Well, says Nuffield, in pre-emptive response, some of that is only what we do already. The report cites the fact that the average height of Dutch males has increased by 20cm over two centuries, taking Netherlanders from being some of the smallest to some of the most extended folk in Europe. Why? Because of the ‘‘relative reproductive success of taller Dutch men’’.
A BBC programme this week featured a Huntington’s sufferer whose father died of the disease and who, for the sake of his children, envisaged a future in which the condition could be taken out of circulation through editing.
Nuffield’s view is that future permission for such editing should be based on two overarching principles. First, it should happen only when ‘‘it is intended to secure the welfare of, and is consistent with the welfare of, a person who may be born as a consequence of using these cells’’.
Second, editing ‘‘should be permitted only in circumstances in which it cannot reasonably be expected to produce or exacerbate social division or the unmitigated marginalisation or disadvantage of groups within society’’. So no designer babies for rich folk, no ‘‘consumer eugenics’’.
At this point, Nuffield demands one of only two responses. The first is to slam the door shut on a future ability to edit the genome. The other is to allow an early peek through the window. In the end I go with Nuffield. Not out of a sense of scientific inevitability but because allowing people to do what I would want to do for my children, and to avoid what I would want to avoid, seems the best principle. Let’s not allow the fear of the worst to drive out any reasonable hope of the good.
But this is a debate. We’re only just beginning it. We could all change our minds. –